First of all, thank you for coming to this website. I really enjoy receiving emails and messages from the wide range of people who visit these posts.
Back in January of 2009 I was started on Remicade. This is a drug which you take via an infusion, and it is approved by the FDA for Ulcerative Colitis. For me, I traveled down to the PAMF Infusion center which is actually in Mountain View, California. I will go into details on a later post about the Remicade and the infusion process. The long story short is the remicade was not working as planned, and I was then started on Humira for my ulcerative colitis.
I can remember the first day I started humira clearly. I made my way up to my GI doctor’s office to meet with his nurse, a woman who at this point was one of my closest friends. (for those of us who have had been given the present of severe Ulcerative Colitis, it is truly amazing how close you can become with your nurses/doctors/even receptionists since they are the first person you see when you arrive at the doctors.
How many people on this planet really don’t mind having shots?
I feel like I am a macho person sometimes. Fell down playing ice hockey when I was 12 or thirteen and slammed my face against the ice, blood was flying out of my mouth since my teeth cut some things up along with the impact blowing a hole in my lower lip. But needles…for some reason never got used to them. All along, my doctor was telling me how it was no big deal. Well, my doctor was right. Needles like the humira needle are no big deal. It is so small, I had to blow the picture up to the left just so you could see the thing. Once I arrived, I had my actual prescribed Humira in my hands. The way it worked for me, I would receive a phone call every few weeks from a drug company to confirm my next order. So, on my first day to start Humira, I arrived with my 4 Humira pens and the 4 yellow pages of side effect information that is included.
When it came time to do the actual shots, this is when I really started to stall with the nurse. You could ask her, but I believe we may have counted down doing the “ten,nine, eight, seven, wait wait wait wait….” anyways, I was there for about 45 minutes before I had all 4 shots of Humira in me. I was hoping that, when I was supposed to take the medications next(in two weeks) that I would get it going much faster.(That never really was the case, but I did start taking them at home which must have made the physicians assistant happy!)
So that is my story of the first encounter with treating my ulcerative colitis via Humira.
Did Humira Treat My Ulcerative Colitis?
Great great question. One that is a topic of debate among the medical world. Going into taking my humira I was really severe with Ulcerative Colitis. Has anyone ever been prescribed Humira for Crohn’s or UC when they were just dealing with a “mild” case of their respective disease? I guess I just assume they save the Humira for when people are not responding to any of the “less dangerous” medications. Well, the fact of the matter is that I was very severe. In looking back on the situation, I would probably only take Humira again if I had tried all the other medications available on this planet including crack cocaine, PCP, opium etc… and going to the bathroom 150 times/day. But that is just my personal decision on when to try Humira again.
Within Two or Three Weeks of Starting Humira
This was probably about the time where things started getting a bit weird. Someday if the Ulcerative Colitis community thinks it would be valuable, I will pull up my medical records and transcribe them on this website, but for now, I think it was about two or three weeks after starting Humira that some side effects start to appear. It all began as some aches and pains in my upper back/shoulder area. It is the type of thing that anyone can easily pawn off as “oh, I must have slept wrong” or “maybe I pulled a muscle yesterday…”
That is exactly what I did for several days if not a week or more. But as all good things must come to an end, I eventually said no way jose, and dragged myself back the gastroenterology department of the Palo Alto Medical Foundation. My favorite gastro doctor was on vacation while this was happening, so I began working with another excellent doctor until the return of my main one. At this point, I had been under the influence of Humira for maybe about 3 or 4 weeks and I simply could not move. Again I don’t remember how bad the skin problems were at this point, but my joints were all messed up. It felt like they emptied out oil in my elbows, shoulders, sternum, and some other parts and I simply was all locked up. To give an example, when it was time to sleep at night, my wife had to push a pillow under my head since my arms were useless. I basically would sit down on the side of the bed, and lay back. Wherever I landed was where I laid. It was almost like dropping off a skuba diving boat, just Humira style. Yeah that’s right, my upper body was all messed up including my elbow area. From the waist down, things were fine, thankfully. At least I could walk.
Decision to Stop Humira
As I mentioned, all good things come to an end, and I stopped humira. This was a decision that was made by me, my temporary GI doctor, and the Rhuematologist doctor I saw at the Palo Alto Med. One great part about going to the doctor this day was they prescribed me some Vicodin to take care of the pain. One thing is for sure, Vicodin works on me. Humira does as well, just not how I would have liked, but Vicodin definitely works as intended. The vicodin gave temporary relief, which was better than any present or gift I have received. At this time, there was also a decision made for me to go and up my dose of Prednisone to 60mg/day which for a 160lb guy like me is a high amount. But, these were bad times, and drastic measures had to be taken.
Even stranger side effects from Humira:
Along with the Ulcerative Colitis, I now had some horrible joint pains in many spots. The consensus as to what I had come down with was some type of Arthritis. This is actually interesting because Humira is normally prescribed to Arthritis patients to help that. In all honesty, I have a very good friend who is on Humira for arthritis and is doing reasonable good. He has not had any fingernails fall off yet, but he has had some psoriasis or eczema problems as well.
For me, another little bonus to go along with the ulcerative colits and joint problems was some real strange bumps on my head. They were something like really large pimples, and they were on my scalp under my hair. And man were they itchy sometimes. The doctors all thought this combination was rather strange, as did my family. I can only imagine what it is like to watch someone in your family go through such strange ordeals. Also, for many of us who have UC, it is not something that just happened overnight, there is usually a long history that goes along with it. So to be adding some more fun on the fire, well lets just say if it don’t kill you it makes you stronger. I must be pretty darn strong then!
Time to go to Vegas
After leaving the doctor’s office this time, I was heading home with my dad, and the plan was to start up the steroids and also some vicodin and to get ready for azathioprine. At this point, I was very familiar with all the names of the medication, and this was just another situation where I was going to try out another medication since the previous ones were not getting me better. WRONG. For some reason I can’t explain, I always thought the word Azathioprine was scary. maybe its the “z” in there. I did pick up that prescription, but this was the first time I decided not to take it. Basically this was the first time I was going against the doctors orders for any of my treatments up to this point. I wanted to wait until my main gastro doctor was back in the office before poping some more pills. That night, I got home and told my wife the deal, and went online to buy a plane ticket via Orbitz.com and flew on down to Las Vegas, Nevada. I stayed at the Monte Carlo and tried to take my mind adrift, which surely happened.
How much did I like my Ulcerative Colitis at this Point?
Most of the doctors I have met with in the past few years have at times asked me this question: “On a scale of 1 to 10 how bad is the pain?” I was asked some variation of this when I went to meet with the doctors from the previous paragraph. I think this is when I started responding with this type of line: “If I had to choose from UC or this joint problem for the rest of my life, I would chose the ulcerative colitis!” That is what was starting to go on in my head, simply based off how limited you are if you can’t move. It would be better to need to go to the bathroom 10-15 times per day, then to not be mobile at all right?
Lets fast forward about 8 months to January 2010.
So, now, it is time to share some photos my current skin problems that started developing after Humira back in May of 2009, and its January 2010. Most definitely, the skin problems have gotten much better, but they are still there for sure. I have been prescribed things like Clobetosol which is a very strong steroid cream. UV Rays, other rx creams, and other stuff I don’t remember. I really don’t think these skin problems are here to stay forever right? But, again, the consensus from the doctors at Stanford Hospital, Mayo Clinic in Scottsdale Arizona, and the Palo Alto Medical Foundation is that my skin problems are a direct side effect from the Humira.
If anyone has similar side effects as this, please contact me, supposedly it is a very small group of people who have this type of reaction to Humira, and I would be truly honored to speak live with someone in the same shoes. Lastly, this particular post is very negative on Humira, or at least that is what I am expecting some people may think. Please realize that my goal is the same as every doctor that is exists on this planet. That is to see as many people as healthy as possible. If you or someone you know is currently taking humira, and is having great results(much like my good friend) than please congratulate those people. My hope would be that someone considering Humira as a treatment option for ulcerative colitis may actually find a way to treat their UC with a much much smaller chance of having these side effects. Had I treated myself with my diet, I am convinced none of this stuff would be taking place now or in the past.
What other ideas are out there? Please post them below!
And, here is another article on Humira and it’s drug information
You may also want to read the following page regarding Humira:
Humira Review Page – https://www.ihaveuc.com/humira-reviews/
I started site shortly after being diagnosed in October of 2008 with severe pancolitis (when my whole colon was inflamed).
For me, it was a very rough start with severe symptoms. Getting bounced from medication to medication was not easy or too helpful. But, I did meet another UC’er, changes several parts of my diet, and of course the rest is history.
Leave a comment, ask a question, take advantage of our past experiences here, use the search boxes, they are your friends to0:)
I’ve written 2 different ulcerative colitis ebooks, you can check them out here.
And, the Free eNewsletter, which has important updates can be joined here.
OMG!! I am going to my gastro tomorrow about problems with my Humira and having skin issues just like this. Both my gastro and my dermatologist have been telling me for 6 months that the psoriasis/ecxema like skin issues on my hands (itching and peeling for last 6 months) and red scaling patches that sometimes itch too on my legs and feet are NOT due to the Humira. I have been on Humira now for probably 1-1.5 years for treatment of my Crohn’s Disease. Thankfully I don’t have the joint issues that you describe but honestly as a woman, I think I would rather deal with the Crohns Disease than the skin issues that I have NEVER in my life had. How can they say it is NOT related to the Humira? Humira supresses your immune system and I’m sure the skin issues are some kind of virus or something or allergic reaction that my body could probably fight off before.
Please any insight that you might could give me in speaking to my dr tomorrow. I have appt at 1pm Central time. I’m so tired of all the doctors saying it is not related!
Hey Leslie,
I was yet to meet any doctors who had seen other patients like me and you who have had this wack skin stuff after getting on Humira, until I made it to the gastro department at the Mayo Clinic in Scottsdale AZ. There, the gastro doc I met with told me I was lucky number 4, meaning the fourth patient he had seen who had come down with the skin stuff after using Humira who had never had stuff like this previously. He had actually seen the patients with his own eyes, not just in some study on paper, so that kinda made me feel a tiny bit better. I am right there with you, at the time, would have rather dealt with the gastro symptoms than the skin and joint problems. Now, that I got my joint and UC stuff under control, still here battling with the skin stuff on hands and shins, and underside of feet(under side of feet is a total pain in the ass) I think at the end of the day, people having reactions like this is rare, and since Humira hasn’t been out for hundreds of years, its going to take a while for cases like ours to make it to the headlines.
Massive good deal that you haven’t had the joint stuff like I had, that was seriously hell on earth. I felt like a 120 year old grandpa.
Your question about why they say it’s not related to Humira meaning the skin stuff…I urge them to get everyone in their family who has never had a skin deal like this and pump them with Humira for a little while and see which ones get a skin problem, and then answer that same question… I just don’t know. Too little time for this drug to be out for doctors to start claiming they know everything about it. There surely is a reason why Humira comes with 4 pages of “possible side effects” etc…that nobody ever reads because if you did you would never take the drug, or at least you’d think super twice about it.
If your doctor wants to have me fax over the chart notes from the doctors at the Mayo clinic who wrote down that the Humira was the cause of my skin situations, just let me know, or if he/she knows how to use email, I’d be happy to send it on over.
Best of luck, keep us posted on how it goes,
Adam
Adam,
I am very appreciative of all your time u put into your posts, i read a bunch for the first time, last nite and this morning.
My husband has been going through the whole uc/colitis gig since he was just out of college, and its just getting bad now.
He was really sick for a long time, and didnt tell anyone, till he almost collapsed from blood loss. When he went to the doctor finally, in a VERY SMALL TOWN IN IDAHO, they took one look at him and said he needed a blood transfusion.
He did the whole COLON CRASH CAM, deal, which very scary to me, NO MEDS AND FULLY AWAKE. Yikes.
He had a bout of remission I would call it in 97′ after we got married, and they did a j-pouch for him, all lapisopic, and since then besides an issue with the pouch closing in, he was doing really well. I remember we drove from N. Calif. to Disney land, and on the way home, never stopped once for bathroom, except to pee.
But its gotten bad again, we moved to Seattle, and did the Remicade nitemare. Spent tons on co-pays, till we owed $12k for copays. He refused the drug, then went back to it after a year. Well needless to say, he had a horrible reaction, all of his muscles, tensed up, to where his jaw almost dislocated itself, VERY SCARY.
They took him off of it, after makin him suffer in the hosipital all nite, lol DR actually told him it was stress related and prescribed yoga treatments. Then found out what the gig was, from Remicade and then treated him with Prendosone and Pain pills for 30 days, cause thats how long the muscle crap was going to last rumor has it.
After that time we went on Humira, which honestly seemed like a godsend, worked way better, gained weight and everything, but he wasnt responding as well as his dr had hoped. They put him on once a week vs, every 2 and things got way better.
When we moved back to Idaho, have been trying to sort out the insurance, and they took him back to bi-monthly treatments. Now hes on the same road as u seem to have dealt with. Skin rashes, severe joint pain, which we have been dealing with for a while, but last nite was hurting him so bad, was having trouble walking.
Which is what led me here finally.
Like I said, all your info is great and appreciated, but I was interested in friend who is on Humira as well. Has he developed any more of the skin stuff, is he still on it. Just looked on the Humira site, and they said to notify Dr ASAP if any skin stuff comes up.
So wondering if he has to stop taking it or what, really scared now and nervous as hell with all the stroke talk, hes over 40, and I cant see that happen to him.
Pls. reply asap. Thank u in advance for your time.
Stacyt
Hey There Stacy T,
I’m sorry to hear your husband is going through tuff times even after having a j-pouch procedure in the past. But, I’m sure he’ll get back to normal soon.
As for your question about my friend, I’m guessing your takling about my buddy who is taking Humira for his joint pains. And yes, he is still taking it, he’s going on three years now, and it has been pretty successful for him. he lives a pretty normal life, back to surfing and golfing and doing most other things. He does mention to me that if he forgets to take his Humira at the two week intervals which he was recommended, he definitely notices it. And sometimes towards the end of the two weeks, he begins to notice symptoms easing back until the next injection takes place.
I wish you guys the best out there in Idaho (one of my favorite states for sure!!)
-Adam
Hi. I don’t have UC, but I’ve taken methotrexate and now Humira for what was initially believed to be RA and skin rashes. It has since been determined that I have Lupus. I had a bad reaction to the methotrexate which inflamed my stomach, gallbladder, liver, and colon. I had my gallbladder removed and two months later, the right side of my colon swelled up to 12 cm and stopped working. Since then, I’ve also been diagnosed with gastroparesis. I’ve never been so sick in my life as I was going thru all of this.
I don’t know how many times I said….”I would rather live with the joint pain and rashes than deal with the GI issues”. It strikes me as funny that you guys feel the opposite. Maybe we get “used” to living with our primary illness.
Fortunately, I’ve not had too many problems since starting Humira three months ago. There is some worsening of joint pain the first week and feeling blah, but overall it’s helping me more.
Hi Amy,
I’m super sorry to hear you’ve been to hell and back with all the med stuff, but that’s great that your having some positive experiences with Humira. Awesome! and I hope it continues forever for you:)
Adam
Hey Adam – I can really relate to your situation as I had bad reactions for Humira. I was on this for 4 years and it started with my skin . I looked dried out and bloated at the same time. Every month or so a would get weird rashes . The Dr said it wasn’t Humira related ?? Ezcema type rash. My head was covered in oozing itchy bumps . kept me awake with the severe itch . This moved to other body parts that weren’t really available to scratch in public ! My eye lids turned to leather and peeled off and so did my face . I almost lost total sight in my left eye. DR said there was no connection to Humira !! The last year was horrible -Rashs all over my face and body and weakness. At the end I came off the Humira on my own as I could not walk. The Humira actually athropied my large arm, butt and leg muscles so bad, and suddenly, that skin was hanging off my limbs. Just like I was 100 years old and never exercised in my life. Before this I was a First Degree Black Belt, lifted weights, jogged,hiked and walked 5 dogs every day. I was never still . I suppose this lifestyle saved me from not ever walking again. I now have nerve neurophy from the Humira and it is not known if it will go away or not . I take 600mg of IBup. every 5 hours but still have immense pain. I would not reccomend Humira to anyone as the final damage seems to come on suddenly after long periods of weird happenings . Glad I saw your article as the Drs still won’t attribute all these things to the Humira . The rashes on your body look like Psoriasis ?? I had these also. Now, after 9 months my skin is finally coming back to a healthy pinkness but I don’t know if the lines caused by the leatherlike peeling will ever go away . I started seeing relief afer 2 weeks of stopping the Humira and visually it got a little bit better every day but I still have little flareups of the rashes only not as bad and briefly . What a long journey! What will become of me and my RA I don’t know as it seems other biologics will probaby bring these reactions back . All the best Adam hope you and I get relief somewhere.
HI Adam I started Humira and I had a terrible flare up of these terrible itchy red patches and some pus filled scaley like patches on my feet and hands and all over my arms and legs. I have been a perfectly healthy 30 year old and then this. it is so uncomfortable and ugly and I am so depressed at the potential scarring of my light skin. I stopped the Humira, but refuse to be treated by another doctor. I am trying to keep it clean and allow it to run its course
Good Luck Brittany, I wish you the best with this resolving soon:)
Hi!
Yes, Humira causes rashes. I told my primary doctor, rheumatologist, allergist, and 4 dermatologist over two years ago. The last dermatologist finally took a skin biopsy two weeks ago, and the test results concluded that I am allergic to Humira, so she contacted my rheumatologist. I mentioned to her that I thought it was also used to cure psoriasis, and she said yes, that it was ironic, that it also can cause it. So, Adam, since you didn’t have arthritis, maybe it temporarily caused arthritis and the psoriasis. I too have discovered that certain foods will cause me to break out in hives—foods that I never thought I was allergic too. I will stay in touch to let you know the healing process. I don’t have an appoinment until November 13th with my rheumatologist.
I too had bumps on my head and the doctors thought I was weird because when I had an appointment, of course they weren’t there. Something that helped the itch for me wa a natural lavendar salve that I bought in Hawaii. The steroid cream will thin your skin. The recent dermatologist said that I shouldn’t have used it for more than 3 weeks if it wasn’t working. It would take the itch away for awhile so I used it until I noticed my skin thinning and a friend who is a pharmacist told me what it did.
I’ve eliminated certain things from my diet and hope that it will work for the arthritis too. I wish us all well.
I have Crohns and had similar reaction to Remicade, very painful Arthritic joints, peeling skin on hands and feet and low mood/depression so had to come off the treatment. Following a Crohns flare my specialist suggested Humira but after 7 doses I am having similar reaction….. the pain in my joints is worsening and so is the peeling skin on my feet! Waiting to see what my specialist suggests.
“I mentioned to her that I thought it was also used to cure psoriasis, and she said yes, that it was ironic, that it also can cause it.”
This doesn’t really bolster my faith in the way physicians approach medicine and healing in this day and age. Ironic? Well, it’s more than just an interesting tidbit of “whoops, didn’t see that coming.” This is people’s bodies; it’s their lives. I feel like the pharmaceutical companies are kind of using us as guinea pigs to see if their drugs work on certain diseases without actually going through all of the painstaking work to ensure their safety. I mean come on. Four pages of side-effects! That’s ridiculous. Then you probably need pills to help take care of those side-effects! Just my thoughts. I hope you get better. Medical science has become more of a trial-and-error kind of thing recently. It’s not really an exact science. I suppose that’s why it’s called the PRACTICE of medicine. The only problem is that we are the ones they are practicing on! Smh.
I have these exact same issues. Although I’m taking Humira for psioratic arthritis and psoriasis I now have developed severe eczema on my hands and feet and my psoriasis is getting worse. I have been on the Humira for 6 months now. My dermatologist keeps telling me it isn’t from the Humira but I dang well know it is.
The picture of your hand is spooky because I currently have what looks like eczema in the exact same spot and exact same shape. Not quite as red but definitely noticeably a different color than the rest of my hand. It also comes along with teeny tiny blisters that have liquid inside of them. I feel sure it’s the humira which I’ve been taking for about 8 months now, especially because with aggressive treatment the hand starts to heal, then gets instantly worse and comes back again within a day or two of taking the humira shot.
Still way better than crohn’s but I wish I could stop the itching. Unpleasant to look at too.
Omg! I know exactly what you are talking about! What the hell are the blisters?! My Dr. thinks my body is just some freak of nature and says humira isn’t to blame. I’ve been on it for 4 months now, and when it started at the 3 month mark my Dr. advised me to continue taking it. In the past month it has gotten progressively worse. I’ve also gotten pleurisy, muscle pains in my neck, shoulders, arms, and back that can no longer be ignored, and my joints are furious. Plus, you know that feeling of swallowing a Tylenol with only your saliva and it gets lodged in your throat on the way down, I have that feeling nearly constantly. At times the spasms are so strong it hurts, and when it finally passes (usually for a couple hours, a day if I’m lucky) it hurts to swallow from all the crazy clinching up n’ squeezing the muscles were doing. I’m not one to complain, and can generally tolerate the negatives that come along with a new medication (nausea, extreme fatigue, whatevz), but I’m worse now then when I started. Thanks so much for your post! I’m going to be showing this to my doctor and asking for a referral to someone else that can actual help.
I have had the same skin experience. I take Humira for Psoriatic Arthritis. But I also have Psoriatic disease so I think it was worsened by the Humira. My nails have had the problems of nail psoriasis for over 10 years before Humira, but after starting Humira I starting getting psoriatic pustule lesions around my nails and on the bottom of my feet. It feels like I am walking on a marble, and that’s about how big they get. I thought I had gotten a spider bite when we went camping, but the hospital did many tests, and the final name they said was that I had psoriatic pustular lesions along with the nail psoriasis, and the arthritis that went undiagnosed for over ten years. Which brings me to the reason for taking Humira in the first place. It took the doctors about 5 years to finally decide I had the arthritis due to 4 hip fractures ( 2 on each side). It was topped off in the summer of 2015 when one day I bent down to tie my shoe, and I felt a sharp pain in the middle of my back. I thought I had pulled a muscle or a ligament at the bottom of my rib cage. This was in June around the 19th of 2015. I was sent for XRays just in case some thing was broken. The XRays showed nothing. But the pain was excruciating. I couldn’t lay on my bed, I had to sleep in a recliner with a soft blanket keeping my back away from the chair. This got worse and worse until one day I decided to go see a chiropractor thinking maybe I needed decompression. This was around August 20, 2015. This chiropractor felt my back, and he said that by the way it felt I didn’t have compression problems. He called me the next day after he had taken XRays, and asked me to come in. I did and he showed me that I had 2 compression fractures that had collapsed over time. The T-7, and T-8. I was referred to a bone doctor, and he sent me by ambulance about 300 miles away. I was put in a hospital where they had many specialists. They put me through MRI’s, and CAT scans of every part of my head to my feet. When all was said and done after a week of torture, they found that I had Osteoporosis of the spine, lower lumbar, and hip region. I had Psoriatic Arthritis, severe compression fractures that caused me a loss of about 3/4 ” in height. Plus they found that my left kidney was not functioning at all. They said it had happened when I had a 11 CM in diameter fibroid removed that was on the outside attached to my left ovary, and the uterus. It was a lot to take in all at once. They fixed my vertebrae with Kyphoplasty. However, I am just now starting to sleep through the night with the longest time being about 5 to 6 hours without pain. I didn’t connect all the skin lesions with the start up of Humiira until just lately when I had to stop taking it until the lesions healed, and I had a bacterial infection. Now I’m taking methotrexate for my arthritis. The worst thing I’ve had is nausea, no appetite, a couple of mouth sores and an occasional migraine. I’m done with Humira. I just turned 50, and I want to look forward to my retirement in 10 years. I’ve always eaten right, jogged, swam laps, and rode a bicycle. My daughter, who is now 30 has ran marathons, and she was my trainer. She taught me how to Juice, and take vitamins. So there is no reason for what has happened. Humira didn’t start it, but it definitely added more. I’m not sure if I will try anything else. I have to take Actonel for the Osteoporosis. Luckily I’ve had no side effects with this medicine. This is the end of March,2016, and I am just now comfortable laying down in a bed. I was thankful for spring break to rest up again. If there is any other kind of arthritis med I should be trying I’d be grateful for advice. I’m just now about to be living in a home where all my kids are out on their own. I want some time to be an adult with only work as a responsibility. Thanks, Glenda the Good Witch Owen.
Just found this. Thank you for setting it up. I have just stopped humira for UC after a year. The first 6 months weren’t too bad, bit of joint stiffness a few days after. Then I started having horrific bowel issues I had never had before, which my specialists totally ignored. All they seemed to care about was that my colitis was under control. Forget that I’m virtually house bound and in poor health! The attitude seemed to be to throw more meds at the problem!
Now, after 5 months of horrific pain from the extra bowel issues, I now have the same horrible marks all over my lower legs as Adam, gynological problems and the bowel issues. I stopped humira a month ago and hope to have it out of my system soon. The brain fog and arthritic feelings are going and I’m hoping the other symptoms will fade in time. I’d rather deal with the UC, at least I know how to deal with it! Never been so ill in my life. NEVER AGAIN Humira!
i totally agree with you ..ive been on humira for the past three months and the pain i suffer is bad enough and now i have skin issies ive never had before ..any advice would be appreciated and im coming off the shots next month …thnak you ..
Hey Vickie,
For me, I’ve been off Humira now for almost 10 months, and the skin stuff has gotten alot better, i still have some nasty stuff on the sole of my right foot, and a tiny bit of scaly stuff on my hands, but much better than before. I am sorry to hear that it sounds like the shots have gotten crazy on you too. Do you have UC too?
I have been searching and searching for treatment for pustules and red scaly skin caused by Humira. I have/had Crohn’s disease/UC and had a total colectomy 6 years ago. Did great for 5 years, then came down with what my Rheumatologist calls “inflammatory arthritis.” After many cortisone rounds, sulfasalazine, methotrexate, etc. was not working for my pain, Dr. prescribes Humira. I was pain free for two months and after 8 injections (1 pen every two weeks) started seeing little red dots and pustules on my feet. This was April 1, 2010. Quit Humira immediately. Now June 1st and after two biopsies and two different dermatologists I have little or no new information. Went on big dose of steriods, Dapzone, topical steroid, antiobiotics (keflex) with no improvement to my skin. This stuff is bad on my feet, hands (look like yours), patchy on my back and legs and drives me crazy cause its on my scalp! Look like a leper. Talked to hubby about going to Mayo Clinic in Rochester but sounds like all they are going to tell me is what I already know – HUMIRA…. I read and am trying to find Calendula lotion or ointment. It has been successful for a person in the UK with the same skin problems. Any help or comment would be greatly appreciated. Sounds like I am in for the long haul with this skin condition. I am so pissed!
Hey Linda, thanks for writting in. Geeze, sounds like the two of us have the exact same thing going here. The picture I have up on the site is from January, which was about two months after I went to the Mayo Clinic in Arizona, and I have a tiny bit of news to report. Basically, I still have one nasty foot, actually it seems now to be contained to the sole of my foot, not so much at all the ankle part anymore. And the nastyness that was on my shins has gotten what I would say is 80% better. My upper legs are pretty much better minus some scar looking stuff from the psoriasis outbreaks. My chest and neck are totally better. My left palm of my hand is better, but still some psoriasis type stuff going on . My fingernail that got all crazy looking like it was going to fall off is better, but still looks very strange and definitely not back to normal looking. As for the scalp, my itchyness is pretty much gone. BUT, I have recently been in the middle of a flare up with some UC symptoms like blood in the stool, and I have within the past week noticed a few tiny bumps coming up on my scalp. Nothing like it was right after the humira, but a few none the less. Also, I have started to have some joint pains once again with this flare in my elbows and collar bone areas which I am not excited about. I’ve pretty much stopped taking the steroid creams that were prescribed. The clobetasol extra stong steroid cream has remained in the medicine cabinet. And, I am not sure what else to tell you other than its all better than it was, not 100% gone, but I am hopefull that someday it will disappear on its own. WOW that would be great. I still feel that the humira triggered all of this, as I never had this before, and I surely had nasty UC symptoms before taking humira. I think that now, my immune system is still out of wack, and since I am going through another UC flare, some parts of the system are all messed up again and causing some flaring of the rhematoid/psoriasis stuff that you mentioned above.
Keep me posted if you get any news on what might work to wack this thing completely. Although I am supper not happy that this stuff looks to be affeecting you too, its nice to know that we are not alone. I think you are only the second other person now to write in with symptoms like this potentially from the Humira.
On a side note, the Mayo doc I saw in the GI department at Scottsdale said he had only seen three others with these types of reactions to Humira, so seems to be a very small group of us.
regards,
Adam
Adam: Did the guys at Mayo have ANYthing, medicine wise, to relieve some of the symptoms? Today, my lymph node at the base of my neck is huge. Going to see a big gun dermo. Dr. in Kansas City Monday. Scalp is driving me crazy! Itching, Itching…..Planning to go to Rocky Mtns. to hike next month. Gotta get my head in the game so I can enjoy my vacation…. If KC Dr. tells me anything new, I will let you know. It is nice to know I have a twin, so to say.
Have a great night.
Hey Linda,
Mayo docs (gastro, derm, and rheumatologist) all had some different ideas on the Humira. They ranged like this, 1) the Humira is out of my system(as it was 5 months after stopping it that I went to Mayo) 2) It will never be out of my system as long as alive and 3) Nobody can really know if its out of system or not.
As for medicine wise, the dermatologist prescribed a new cream, one that was not as strong as Clobetasol as that one has long term risks of thinning skin etc.. That derm doc prescribed a mid strength steroid cream that was mixed heavily with a non scented lotion. I used it for months, just to help the cracked skin deal, and it helps with that, but was not able to get the skin problem to go away on the worst parts (sole of feet and palms of hands) Also, that doc prescribed a tar lotion/cream to try. It turns out tar has been used for psoriasis for many many years. That stuff stinks as far as smell goes, and is a bit messy, I tried it a few weeks, and did not notice much help if any personally, but if you haven’t tried it its, worth the try I guess, no side effects I think.
AS for scalp, my friend who is on Humira and had a the scalp issue too told me about a tar based shampoo he uses and it works for him. I tried it, and either by coincidence or magic or a combo, it seems to work well. I use it about once a week or twice. The name is: Neutrogena T Gel. It is brown in color and has a bit of an odor, but I have gotten used to it. I wouuld highly recommend giving that a try to relieve the scalp itch, which is a SUPER pain and super annoying, I hear you on that.
let me know if you have any other questions. Adam
Thanks Adam. Sure appreciate your time. Will let you know what the Kansas City Superdoctor says. My guess – my prognosis is as good as his…..opinion.
Adam: Guess what? The Superdoctor derm in KC told me I had two options. 1. Try Scelera ( which he did not favor because of neurological side effects or 2. Take weekly injections of Enbrel. (it has massive effects too, I see). I’ve come to the conclusion I am in a pickle, but willing to try for a month as he says I will likely see relief when I see him on July 12th. If I improve, or get much better, I am getting off of this stuff. Rather live on pain meds for the arthritis. Still scared and upset about all of this. I hope you are doing ok. I know what flareups can do to your general state of being. Take care. Linda
Hey LInda,
wow, super interesting. I can’t honestly remember if those were some drugs that the derm people at Mayo talked about. I wish you some great success with what you go with. Keep me posted.
Also, I’ll be posting a new post with a funky video shortly about how I’m doing. It looks and feels like things are going away on their own. I did do some tightening down on coffee over the past week. Still some come and go joint stuff. Its almost like one day my right elbow upper arm is feeling sore, next day that’s better, but the other arm now has the issue, then that’s gone, then my lower back the next morning etc…. REALLY STRANGE indeed.
Good luck, LInda,
Adam
Linda,
I wrote an earlier note today to someone. Hopefully, it’s posted. I didn’t mention there, but I too have 10 sollen lymp nodes throughout my body and have had three biopsies since April. None were cancerous. supposedly, one you get off Humira, they are suppose to decrease. It’s too early for me but I will stay in touch.
Lucky, I have waiting until my teeth with root canals started having problems. After three root canals on teeth that already had root canal and two teeth removed – I anm sick of humira
I am being followed by a dermatologist for the same kind of reaction. With time and various forms of cortisone it is passing and slowly getting better. Currentely, my Dr has me doing UVB therapy which I believe is helping some. I thought I would share. recentely, My Dr has opted to lower my dose from 40 mg every 2 weeks to 30 and to see how that does. I am willing to try because my stomach is doing so well.
Good Luck.
Adam, I have been on your website before and thanks for the info. I’m at a crucial crossroads and need some info./feedback. I have been on Remicade for 3+years and UC for 27+years. I am having some delayed allergic reactions to the remicade+was curious about yours? I feel lousy, like too much gravity, virus-type feeling, dizzy, etc. My doctor wants to stop Remicade, have a colonoscopy and then start Humira. Obviously I’m guite nervous. The “real” side effects never seem to be at our doctor’s hands. Anyway, any feedback would be great. Thanks, Shelly
Hey Shelly,
Thanks for writing in!
I did not have those types of side effects from remicade, but I was only on it for 3 infusions. How are you doing with UC symptoms right now? I think if it was me, I would take a good look at my current UC symptoms and base my next step off that. If you are in the middle of tons of UC symptoms, to me that’s a whole lot different than thinking about changing medications when symptoms are not present.(Of course all doctors are probably going to tell you to make sure you keep treating your UC with some type of medication, even if it is in ‘remission’, but I personally don’t quite agree with that)
What other medications have you tried out before the remicade?
Have you tried any alternative treatments yet?
Let me know, and I would be happy to respond further. For me personally, I would not myself try humira again as it was a total disaster for me(BUT please also realize that is just my story, and hopefully others have had great experiences with it)
Adam
Adam, Thanks so much for your feedback. I went this morning and ordered some other books on UC diets including the SCD, but I really don’t like many foods, very finicky, not a huge fan of yogurt and homemade sounds even worse!! Life without bread and pasta???
Anyway, I have been on most all meds. from top to bottom(those I will never understand when you are running to the bathroom, how do you keep those in?! and with 2 dogs, that was fun, too!); allergic to 6mp (conveniently masked by prednisone until the taper!); gallbladder out 2years ago(took 3 months to figure it out after a hospital stay and a hear cath. since heart disease and (crohn’s)runs in my family)…remicade???and shingles in Nov.; well, basically after 27+ years I am at the end of my list. I’m in the beginning of another flare along with these weird Remicade reactions(last dose on the 25th-I was 400/every 4weeks, never got to the maintenance dose), and my doctor does not want me to get behind the proverbial 8-ball! And I guess I agree. I also think diet is only a piece that helps more when you are in remission. I have found with UC that when you are fine, you can eat and drink pretty much anything, but when you are not…even water will send you! Other than that, I’m fairly healthy, 42, active and luckily I am on summer vacation!
That’s where I am, sorry so lengthy. I appreciate your feedback(&others) since it sounds like we’ve had some similar reactions.
Thanks again, Shelly
Adam:
You said something in your write-up about a “diet.” Of what diet are you speaking? Sorry to hear about the Humira…hope you are doing better in that respect…I am at a cross roads as well… I’ve been told about Humira..and a couple of other drugs, but I am scared to death of them…so, my last option is a colectomy, which I’m going to find out about in two weeks from the Dr. Are you still on 60mg of Pred? That’s quite a lot…
God Bless!
Hey Jimmy, there is a page on the site that is all about the diet from point of view here.
I stopped taking Humira about one year ago exactly, which I was scared to do because my UC symptoms were so bad at the time. And, to answer your second question, no I am off all medications compeltely. I tappered off the prednisone compeltely by October 2009 and haven’t taken any medications since.(Also, I haven’t been to the doctor yet this year, which I am pretty proud of too)
I know what you are talkinb about regarding the crossroads. I was there too just a year ago, getting ready to talk to surgeons about the surgery. If you were me, I would at least try the diet before doing anything drastic like surgery. That is what I did and it has gotten me better.
Good luck, and keep me posted, feel free to ask any questions you like,
Adam
My husband is 49 years old and was prescribed Humira in April 2008. The last injection of Humira that he gave himself was June 30, at approximately 7pm. He had a massive stroke in the early morning of July 1, 2010. I know that the Humira caused his stroke and after researching further I found out that the longer a person takes Humira, the chances of a heart attack or stroke increase as Humira can cause blood clots along with many other things. Also, Humira was given a “black box” warning in August of 2009. This is the harshest warning that a drug is given but evidently most doctors aren’t even aware of this warning. Had we been informed of this warning my husband would have stopped Humira immediately. Thank god I still have my husband but our lives has changed drastically because of Humira and we are praying that nothing else is going on in his body because of this drug.
Hi Angie,
It looks like I was prescribed the medication one year after your husband. Wow, it sounds like your family has quite a nasty story with the Humira. Was he also taking it for ulcerative colitis? If so, he would be only the third other person I’ve heard of through the site who was taking it for UC!
I really hope the best for both of you, humira was an absolute nightmare for me as well, and I am so happy to be off it for over a year now, especially after reading your comment last night. I think I’m still shaking a bit from your comment even today. I hope your weekend went well, best regards,
Adam
(reply to your Sept 12th question) Adam, My husband was prescribed Humira by a dermatologist! for psoriatic arthritis and because Humira was supposed to help psoriasis, which is what my husband was seeing the dermatologist for. Yes, a dermatologist!! The doctor made this drug seem like a miracle drug with no mention of side effects. Looking back the side effects started about 2-3 months after the Humira injections were started. Severe neck pain for no reason, ringing in the ears, fatigue, no energy to move at all, etc. My husband had a massive stroke on July 1st, less than 6 hours after his last Humira injection. I have learned to investigate drugs more thoroughly no matter what the doctor says or does not say. I truly believe that the Humira was the cause of his stroke. Also, the doctors were stumped about his stroke. All tests done in the hospital pointed to a “massive stroke.” The neurologist kept telling me how massive the stroke was but my husband has very little physical signs of the stroke, thank god! There is some brain damage but he was still very lucky. This is a very, very harsh drug and I would advise people who want to try Humira to monitor this drug and it’s symptoms very, very carefully. Also, a dermatologist should not be allowed to prescribe a drug that has been given a “black box” label! Thank you,
Thanks Angie for your response, I hope people who are contemplating Humira take some time to read about others experiences with it. For sure there are some people who have had success, but for sure that is not everyone too. That is just so great that your husband has not had much in the way of brain damage, super thankful for that.
Hi Adam nice site I am on humera for uc and crohns I am having problems with the itchy scalp and sores on my head also itchy and sores on my lower area ugg it’s awful also joints are sore and I feel like a car hit me if I sit and then try to get up it takes so much to get up like I’m 80 and I’m only 46 I only got digonosed last yr and had a bad flare ended up in hospital then on humera it’s been a year I would love my old life back I gained weight it’s not fun at all
Hello
I’m from Scotland and have been taking Humira with methotextrate for over 2 years for psoriasis and psoriatic athritis. It has improved my life 100%, I now have little patches of psoriasis behind muy ears and I’m able to walk freely (although not as much as I would like). Your comment about Humira being prescribed by a Dermatologis!!! I feel is a little unfair. In the UK, Humira, together with all biologics are prescribed by relatively few Derms and in fact GPs have to send patients to the Derm to have these medicines prescribed. They only prescribe biologics if all other systemic, treatments have failed and we have to attend clinics every 10-12 weeks for bloods etc.
Hope your husband finds relief from his symptoms as psoriasis and psoriatic athritis is a horrible disease.
Regards
Carolyn
I’m reading this and feeling bad for you all. Humira has been a miracle drug for me. I’ve had severe, painful and disfiguring psoriasis my whole life, starting at age 10. I was always a freak of nature and was bullied and made fun of. I couldn’t wear bathing suits or shorts or prom dresses without being stared at. My legs looked just like yours in the picture above. As I got older, I developed debilitating psoriatic arthritis. When Enbrel came out, it was the first thing that had ever helped me. After 3 years on Enbrel, it became less effective and the DERMATOLOGIST (yes) switched me to Humira. It has been the best thing ever. Ever. For the first time in my life I’m not stared at and made fun of, and I can now go back to playing guitar, which I couldn’t do for years, and can do other sports now besides just walking. My derm told me when I started taking the Humira that, in some people, it can actually trigger psoriasis in people who’ve never had it before. I think this should serve as a clue for what underlies UC, Crohn’s and psoriasis, and hope that doctors might study these opposite adverse reactions and uncover the connection between the various disease processes. I came to this website because, yes, I do worry about long-term effects, but for me, the benefits have soooo outweighed the negatives, I will stay on it as long as possible. For scalp skin problems, ask your doctor about Derma-Smoothe. It’s the only thing that has ever worked on my scalp. Best wishes to you all and good luck finding lasting help for your terrible diseases.
Adam, I have UC. I have had it now for about 15 years – in and out of flare-ups. Each time I got pregnant I would have a flare-up and this last time I never got it fully under control afterward. So, since March of 09 I have been having a lot of bad days. Since August of 10 I have been in a full fledged flare. We have tried Asocol, sulfa drugs, Colazol – I have been on 40 mg of prednisone since Aug, trying to taper off and my symptoms worsening when I get to 30 – 25 mg. I am in the bathroom no less than 20 times a day, I am cramping, bleeding, tired, I am now low in calcium, Vit D, Iron. I have three little kids and I can’t hardly function. The doctors have thrown their hands up and seem to be down to their last two words: Remicade and Humira. Due to our insurance, Humira is more of an option than Remicade and I was all set to give the ok to start and I read your post. Now I am scared crapless – ok, not really. Crapless is the unattainable dream of the UC club. But, I am scared. I am scared not to go on it because I can’t take care of my family under the current circumstances, but I am scared to go on Humira because of your and other stories like yours. What did you do to control your UC?
Elizabeth
Hi Elizabeth,
Hey, I’m really sorry that you haven’t controlled your colitis for so long.:(
But, a ton of people here are rooting for you(and I think you can do it afterall!)
Your situation is sounding much like mine(except I havent’ been pregnant yet, nor have kids but sure hope so.)
Anyways, to answer your question, I tried the SCD diet which you can read about on the SCD page.
At the time I started it, I was having symptoms but only on about 15-20mg per day. I had tried all the drugs you have,the asacol, colazal, prednisone, sulfasalazine, remicade and humira, and it didnt seem to do the trick.
Full disclaimer here, I’ve been on the diet for about 16 months and have had two flares. Pretty minor flares compared what I went through before, and I can honestly say that they probably happened due to me getting off course from the strict diet(coffees with cream twice daily is a no no for example) but when I went back on it hardcore, things have gotten better again, and most importantly back in control of my life.
My doctors have been great from the GI side, but none of them ever said diet had anyting to do with my disease. but my only other option was surgery at that point as I was sick of the medications and the side effects and the dangerousness of longterm prednisone use.
There is a ton of information on the site about the diet, and others stories. I encourage you to read them.
Thanks for posting your comment, this particular page is a really special page to me concerning the humira.
best of luck and stay in touch,
Adam
Dear Adam and Elizabeth:
First of all, Adam thanks for the information. I’ve had UC (always constant, no remissions) for 15 years now. I know about the joint pain and swelling and the nodules. I know about severe fatigue, having my husband pull over into a patch of mesquite trees on the side of the road “right now!!” so I don’t have an accident in the truck. I am 39 yrs old and I’ve been on Remicade for 10 years, which changed my life. Things aren’t perfect, but it’s being managed.
My doctor asked me last month if I wanted to try Humira. Sometimes I wonder why my doctors always seem to want to change things. I figure if it isn’t broken, don’t fix it… but she thought it was a great idea and I was considering it until I read your post. Eeek. My skin is a weak link for me anyway and I wouldn’t be surprised if that’s where the side effects settled in. Thank you so much for sharing your story. I had no idea things like this were happening.
To Elizabeth: I have lived with a disease that, from the outside, you look fine. There have been people in my life that roll their eyes and basically say: “suck it up. There’s nothing wrong with you.” Just the fact that there are others with these issues and understand means so much to me. I have two daughters and I know what it’s like to not have enough blood running in my veins (because it’s going in the toilet) to even have the strength to get out of bed, but doing it anyway, because you have to.
If you have the option, I would try Remicade first. It’s very expensive, and my insurance company is not happy to pay for it, but they do. (I have Cigna HMO individual plan, and I pay $652. per month for it. Ouch. But the alternative for me is being a worthless mom, so I have to look at it like an investment for my children…) Remicade doesn’t take all the joint pain away, but it controls my colitis for the most part. And that is worth gold. I don’t know if it will work for you, but from what I have read, it has fewer side effects than Humira. Just for information, I take 4 vials of Remicade every 5-6 weeks. I am 5.2″ and 118 lbs. Keep the faith.
Jaimee
God bless you
Adam,
Wow. Aside from being on Remicade (rather than Humira), my story is quite similar to yours. After my third infusion of Remi, I came down with total body hives that took several weeks to clear up. After the dust settled, my scalp began to create those ‘strange bumps’ you mentioned. Then, the palms of my hands started to crack and scale. Also, spots (like those on your legs, but not as severe) started to pop up on my shins, calves, and the sides of my feet and hang around for a few months at a time. I decided I needed some help when I started to scratch holes in myself trying to deal with the infernal itching.
When I saw my dermatologist and I explained to him that all of these things happened directly after a Remicade infusion, he looked at me confused and said, “But you’re already on the strongest medication we can give you for the condition you are seeking treatment for.”
My history. Diagnosed with UC at age 15 (now 35). I already had had previous small (but undiagnosed or treated) psoriatic episodes all through my teens, 20s and now 30s. Example – small rashy spots that wouldn’t go away for a few months and that would mysteriously get better with sunlight exposure. All of these were mild… small areas about the size of a quarter (and I’d only have one or two spots at a time). I had shown a few of the spots to general doctors on occasions, but they always told me that it was just a little eczema and I should put some over the counter cream on it.
When I asked a GI about a possible connection between UC and my rashes (usually abdominal or around the hips)… he said ‘rashes come with the territory of UC.’ And that was it. Nobody ever recommended that I see a derm.
So now finally I’m at the derm’s office with something significant to show him, and he tells me that I have had psoriasis all these years but it had yet to be ‘triggered’. Basically, the condition was like some kind of ticking bomb. I had an allergic reaction (could have been anything) and it kicked me out of remission from psoriasis.
He prescribed me some topical steroids and wished me luck. “Come back when things get worse.” So I have topical Clobetisol ointment for my hands, abdomen, back, legs, around me ears and feet (tops and soles). And a alcohol Clobetasol solution for my scalp and ear canal if it creeps in there. I have to use the steroids doing spot treatment almost daily or lesions will come back in a matter of hours.
And now, I also have a tentative diagnosis of Renaud’s Phenomenon… because the tips of my toes turned purplish and bruised up.
I dunno, I certainly would NOT want the UC back in exchange for the clearer skin I had before Remicade. But I have a hard time understanding how a medicine which is supposed to be helping me ward off these symptoms inspired the exact opposite response.
The derm said, “OK, so… it’s quite possible that without the Remicade you would be having a much more severe psoriasis response at the moment.”
But of course, we can’t know if it would be less until I stop the Remicade treatment. I’m not willing to give it up yet. It’s my first time in 20 years being from from intestinal lesions. I can live this… just as long as it doesn’t get any worse.
my 14 yr old daughter took her first two doses of humira for c.d. I stopped the humira after her second dose because she was suffering so much from migraine headaches, and flu like symptoms which her g.i. docs were not concerned with. After stopping the humira she got psoriasis on her hands and joint and muscle pain which I am convinced is a delayed reaction from the humira.
joint and muscle pain got so bad, she needed crutches. she is now managing things with prednisone and diet and we are working on weaning off prednisone and using diet to manage her symptoms.
Ironically, since working on the dietary approach, her G.i, issues have been non-existent. It is the upper respiratory and muscle-skeletal issues that are the real issues now.
I am curious….does anyone tend to experience more muscle-skeletal pain after exertion or does it come on without any exertion.
thanks,
nina
Hey Nina,
I’m so sorry to hear your young daughter had to deal with the same stuff as me(and several others as you can see from the commentss on this page)
Wow, I can’t imagine what life must be like in that shape at 14 yrs. I know as well exactly what you mean when she had to resort to crutches to move around. That’s how I felt, I guess I resorted to massive amounts of vicodin pain pills, probably not the best way to skin the cat, but anyways.
As for your question about exertion and muscle skeletal pain, for me it comes and goes pretty much as it wants, and its so hard for me to track down the rhyme or reason behind it. Its a mystery to me. Like right now for example, my right shoulder and right elbow are going thru a relatibely nasty joint/musle deal, along with my right upper chest. Pretty much the same places as when I wrote this post a while back.(and I’ve been humira free now for over a year and half) but my skin stuff has never gotten as bad as it was after humira, thankfully.
If you search the site, there is another article I wrote which has details from a doctor from belgium who did a great medical study on the skin lessions on patients who did humira and remicade, here is the link to it: https://ihaveuc.com/psoriasis-and-eczema-following-remicade-or-humira-use-for-ibd-patients/
I wish you well and the same for your daughter!
-Adam
I have the exact same thing and I just stopped my humira a month ago because it made me feel like crap but my dr kept me on it for about 5 months saying that I couldn’t call it a failure yet… BS!!!! This rash has basically eaten my right hand and elbows and is now starting on my legs it itches and is painful. I really hope it goes away. I have Crohn’s disease and I didn’t have any symptoms at all until they started treating me (was discovered on a CT scan when I needed my gall bladder removed). I feel that when I’m not being treated I have less symptoms and every treatment gives me a flare and then I end up getting C-diff (been diagnosed 3 times so far). I really hope you find something that works for you my sister had UC and just had her hole large intestine removed. Good luck and god bless!!!!
Nina, can we talk over emails? i have too developed upper respiratory issues due to humira and would like to discuss if it’s ok.
Hi Adam,
Studies of prolonged (and even short term) TNF alpha inhibitor use (Remicade, Humira) is rather non-existent. Scientists do know that Humira plays a role in “dimming” Your TNFα which is an important cytokin related to inflammation regulation. However studies into cytokins that are part of the Tumor Necrosis Factor family have shown that dysregulation can have severe negative impact,and can cause a wide array of diseases to “spring up” that have previously been asymptomatic.*
*Locksley RM, Killeen N, Lenardo MJ (2001). “The TNF and TNF receptor superfamilies: integrating mammalian biology”. Cell 104 (4): 487–501.
As far as Humira is out of your system for good, the third answer holds true, it is impossible to tell (at least with today’s technology). This is because Humira is a human monoclonal antibody, meaning that it is an exact clone of a human antibody. This is something your body creates naturally when there is an infection or disease inside the body. So therefore it would be impossible to tell whether it is Humira inside your system, or whether your body is creating these antibodies itself (Humira induced or not).
Just a mention on the skin issues that you and others are having. My honest opinion is that since no comprehensive study has been done on this treatment, only time will tell if your problems will go away. The best thing to do would be to take a “mind over matter” approach to this situation. Since there is no concrete evidence that these “psoriasis” like lesions will stay forever, then there is always hope in believing that they will go away at some point.
Good Luck.
Hi There Helper,
Thank you so much for your detailed answer! I really appreciate it, I’m guessing you must be a scientist, or something along those lines!!, or should be if you aren’t.
Anyways, I really appreciate your feedback, and to give you a bit of an update since that post, I have gotten much of the skin issues under control, lets say about 95% better, but still some stuff underneath one of my feet and on the sides of my foot, but nothing that is worth worrying about anymore. I am not sure if you saw this more recent post, but it has some study based evidence from a doctor who I contacted from Belgium, you might find it interesting, and here it is, and stay in touch, your help and ideas are much appreciated!:
https://ihaveuc.com/psoriasis-and-eczema-following-remicade-or-humira-use-for-ibd-patients/
I want to hear about your diet I am on lialda, humira and gleevec for cml, I am considering surgery tired of the pain and colon problems.
Hi Shawna,
I use the SCD diet, there is quite a bit of info about it on this site, and especially on this page: https://ihaveuc.com/the-diet
give it a look, it has helped me greatly with getting off the medications and having a pretty good lifestyle.
Hey Adam.
Glad I found this. I’ve been developing psoriasis with patches like yours on my ankle, foot and scalp, as well as little scabby-like things all over. It dawned on me that it all started after I started taking Humera. Glad to see I’m not crazy!
Bummer though. I have Crohn’s disease, and I’ve had some pretty serious battles with it, and Humera has given me the the first consistent relief I’ve had since being diagnosed.
Hey Danny,
It always so crazy hearing about others who have had similar experiences, especially on the side effect side of things. There is another post on this site which talks in more details about this psoriasis/ “skin lessions” stuff based on an actual medical study that was conducted in Europe regarding these types of drugs. you should check it out, I was emailing with the doctor who headed up the story and he thought that I pretty much for sure had the same skin issues he was studying. here is the link: skin lession study
Hey. Is there a website where I can go to get some “real” info on uc? I have too many medical issues to count and my rheuma is trying to tell me that it is all from my uc of 15 years. I was going to start humira, but no more. I had not heard of the diet but i am going to try it.
Thanks,
jenn
Hey Danny,
Thank you so much for your information, I started Humira treatment about a year ago for my psoriasis. Reach my first year as of June 11, 2011 free and clear, i am so happy, but my nightmare is just started.
Since my last injection of Humira, on July 1, 2011, I experienced extreme muscle-skeletal and joint pain. More of those pains rotate from different locations, e.g. foot arch, toes, knees, ankles, wrist, chest, elbows, neck, fingers, forearm, thighs and back. Other symptoms like ringing in my ears, stiffness of muscles, cracking in joints and it itches everywhere. I am a very active person, but as of today, those sports I played seize in my life. Someday, pain level is so overwhelming… can’t even move.
Symptoms of Psoriasis are appearing. Thinking to myself, what have the drug company did to me. Ending up with more issues from where I started.
Sigh***
Hey Adam,
Glad that I found this!
I’ve been on Humira for about 5 months now for my Crohn’s. I’ve been feeling great but 2 weeks ago I start developing small blisters on my palms and on the inside of all my fingers near knuckle. The blisters eventually turn into a dry, itchy, scaly skin. By searching the web, my symptoms most resemble Dyshidrosis.
When I was in my teens, I suffered from psoriasis on my hands and feet but it hasn’t been an issue since I was 20 (I’m 29 now) and never with blisters. I can only assume that the Humira has awoken something dormant. I’m seeing a Dermatologist tomorrow so I’m hoping that he will be able to prescribe me something to treat this problem. I sure hope that this will not inevitably force me to stop my Humira treatment because it’s been doing wonders for my Crohn’s!
Dan
Hey there Dan, crazy eh how it sounds like we both might have had the same side effects post humira use… I hope it clears up for you soon, I’d be interested to know what your doc has to say. Either way, that’s way cool you are seeing some relief in terms of your crohns symptoms!! That’s awesome. Adam.
Adam – yes, it definitely sounds like it’s much more than a coincidence that Humira patients have developed skins issues. The Dermatologist prescribed me a tar consisting of cade oil, ihle’s paste, hydro-cortisone, and Salicylic acid. The stuff smells horrible and stains the skin so I might test out hydro-cortisone on its own before resorting to the tar. Luckily it is just on my hands and has not spread elsewhere. We’ll see what happens.
How’s your Colitis been doing? Have you been on any meds? Has your skin cleared up?
Dan
Hey Dan,
I think I was prescribed something similar to what you talk about in terms of a tar cream type of thing that’s pretty smelly. My colitis has been in remission for quite some time now(about 6 months) and I’ve been drug free for about 6 months too, so hoping to keep that rolling. I just follow a pretty hardcore diet called SCD.
As for the skin, I still have some peeling skin under my right foot, other parts of my body are all back to normal. Strange how I just can’t get the under side of right foot to heal up but it doesn’t really affect me other than sometimes looks gross to others who look there.. stay in touch and good luck to you,
adam
Hey Dan,
Take a moment and check out the story from Drew about the skin stuff and Humira. I just publisehd it a few minutes ago and was thinking of you: https://ihaveuc.com/help-for-the-rash-and-itch-from-humira/
Hi Adam,
I have had Rheumatoid Arthritis since 1981, finally officially diagnosed 14 years ago. 3 years ago I was put onto Humira. I actually have been doing well all this time, up until a very stressful time in my life this year. All of a sudden my left hand looked exactly like yours and the bottom of my left foot looked the same. Funny thing, it really did not effect the right side of my body. I have a call into my Rheumatologist, so I’m waiting on his call back. Any more updates on your findings?
Gina
Hey Gina, Wow, pretty crazy we got similar stuff going on.
Actually, most of my skin stuff has gotten better, EXCEPT for the bottom of my right foot. It did get all better, and then about six months ago it started getting worse again. Right now it’s pretty nasty looking but it doesn’t really affect me otherwise. I sure hope it gets back to normal again, so I can stop thinking about it/picking at it… yuck yuck.
I wish you the best. If you get any news from your appointment, please share it.
All the best to you,
Adam
I had a similar experience with Humira. I developed pancreatitis ,folliculitis, and psoriasis on the same day as my fifth injection. It might have been my sixth, as my memory has seemed to have grown lazy.
Hey Annie,
I’m sorry to hear you had those side effects too. Did all the side effects get better over time? Are you still dealing with any psoriasis? I still am somewhat, and it kinda bugs me…
This just recently started in the first week of August. I have not had it clear yet. I am trying to keep positive. If I could go back and never take the Humira, I would. This has affected my life in such a negative way. I would rather have limped through life with the arthritis than to have my hands and feet constantly blistering and peeling. They say hindsight is 20/20.
I have pustules on my hands and feet. I am not sure what I have on my legs. It is splotchy and has small bumps. My scalp is awful. It flakes, and bleeds. I have inverse psoriasis under my breasts and a small patch on both underarms.
Annie
Hey Annie,
I had the exact same thing you are talking about it sounds like when I started humira.
If you haven’t already read the story I wrote about the Belgium doctor who completed the study about Humira and Remicade and how it rarely can turn into the “skin lessions” as he called it.
The good news for me is that since it’s been about 2 years since I last took Humira, my skin stuff and my arhritis stuff has gotten remarkably better. Still just a little bit on my right sole of my foot, but other foot is clear, my legs are now clear, same for my chest and my hands are both back to normal thankfully.
I wish you the best, let me know if you got any questions about any of it. -adam
Hey Annie,
Please take a moment and read what Drew just submitted to the site regarding Humira and the skin rash stuff. he may have an idea you could look into:
https://ihaveuc.com/help-for-the-rash-and-itch-from-humira/
Hey Adam et. all,
I have ad Chron’s Disease going on say 15 or so years. Initially, my diagnosis was UC. I had a FULL colectomy, and since my disease was still active, it was decided I had Chron’s. Sooo, essentially my full colon was cut out for no reason. I was a young guy when I first got diagnosed, around 11. I am now 26, and I have tried EVERY drug out there. From Asocol, Asulphadine, 6-MP/Imuran, Cycloporine, Remacaid, and now Humira. I have been on Humira for just under 2 years or so. Initially, it was GREAT, because in addition to Chron’s I have rheumatoid arthritis and ankylosian spondilitis. I initally took Remacaid despite an awful allergy with pre-meds. Seriously, like anaphylactic shock allergy, but still took it for 7 or 8 years, but developed strong anti bodies. After switching to Humira, it initially seemed like a miracle drug. Now, I have some CRAZY skin problems. Mine are ONLY on my palms/fingers, and soles of my feet. NOWHERE else, and my feet and hands look infinitely worse than the pics shown. I look like a zombie/leper. I have tried clobetasol, coal tar, betamethisone, and NOTHING is working. I am still on Humira, because my Chron’s is bad, it can be life threatening. Adam, would it be possible to email me? I have no friends with similar conditions, and would really like to compare some strategies. Thanks for all the info as well everyone.
Sam Henson
Hey Sam,
I jsut got a story submitted from a guy named Drew. You should read his story: https://ihaveuc.com/help-for-the-rash-and-itch-from-humira/
He might have a solution you can look into for dealing with the Humira skin stuff.
Hi Adam,
Thank you so much for writing about this! I thought I was crazy!! I started Humira about 5 months ago since my Crohn’s had gotten really severe. Did very well on it, but had a very large fistula that just wouldn’t heal, so had to have surgery this last July. I have a colostomy now but can have reversal surgery in about 3 months.
I take Humira every two weeks, and starting about 6 weeks ago, I started getting severe joint pain around 3-4 days prior to giving myself another injection. I couldn’t lift my arm, turn my head, etc. The pain was severe and I felt like I was 90! After I would take Humira, it would go away in a day. After the second time it happened, I had my suspicions it was from the Humira but thought I’d wait to see what happened before my next dose in two weeks. Well, it happened again and I couldn’t take the pain anymore and called my gastro doctor. He recommended I take it every 10 days instead of every 14–I think he is trying to prevent the onset of the joint pain since it happens about 4 days before my next injection. I’m not sure this is a good thing. I will have to be off of it when I have my reversal surgery and am now not looking forward to that at all. I can hardly move! Not sure what I should do.
Could you tell me how long you were off of it before the joint pain started to subside? Luckily, I don’t have any skin issues yet, but wondering if that’s next. Thank you again for writing about your experience–it helps tremendously to know that I’m not the only one who this has happpened to.
Carolyn
Hey Carolyn,
Great to hear from you, I’m sorry its under these circumstance. And I hope all goes well for you with the reversal surgery.
From what I recall, the joint pain got quite a bit better within about a month or at the most two after getting off the humira. It was still there, and even sometimes now it still comes and goes. But NOTHING AT ALL like when I was in the middle of the H drug. It was really crazy to see it all going down with the joint pain. its been a few years now, but reading your comments brought the memories back of not being able to move my upper limbs at all. And the nightly struggle of just laying down in bed and then getting up and out of bed etc… I know how terribly difficult it must be for you right now. I really wish you the best with geting better and finding relief soon.
One thing that did seem to help quite a bit was vicodin when the pain was at its worst. its a very addictive narcotic, but oh my…it sure allowed me some decent sleep a few nights, and allowed me to function during the days as well. I remember being in a friends wedding while all this was going down, not only was I pooping all the time but the joint stuff was real bad too, and if it werent for the vicodin, I surely would not have been able to get by. Carolyn, good luck to you, take care, and keep me posted on how everything goes. I wish you the best,
Adam
Hi Carolyn –
I came across your post on Adam’s topic about Humira and side effects. i’m writing because your story, as of your Nov. 11th , 2011, is exactly sounding like mine. I had a perianal fistula due to Crohn’s and had to have it incised , drained and packed. The surgeon came in the next day and told me I had to have a colostomy in order for it to heal. But, he told me it was a diverting colostomy and that after the fistula healed, I could have it reversed. Have you had your reversal?? Please contact me either way – I would love to connect with someone who knows what I am going through. I am getting scoped on Nov. 30th – my GI said if it looks good then we can talk about reversal. I am scared about this, though. Will I have to go through all the symptoms I had before the colostomy? Will it not work? Ugggghhh! Looking forward to hearing from you!
In health, Mary
I went for consultation at UCSF. I have a diagnosis of psoriatic arthritis. The doctor would like me to take a combination of Enbrel and Methotrexate. I am so scared to try these drugs. I don’t think I am going to. My hands and feet have started to clear after starting a different ointment called Talconex. I just started using it on my scalp. I would like to see if it clears my scalp, and if my hair will start to grow back in. I am nervous to stop taking the Talconex because it does have a steroid in it, and I worry about a flare. This whole situation just plain sucks.
Hi there Annie I was diagnosed with same as you two yrs ago went down route of methotrexate made me feel so bad came off that then tried another medication That made me so ill!! then the Humira for six mths that did nothing at all!! now i have realised they where treating me at the hospital for something i did not have!! i HAVE FIbromyalgia chronic illness in constant pain 24/7
Adam, I read a few of the responses to your post and I felt obligated to share my story in hopes that I can get some answers and hopefully those answers can help someone else–even if its just one person. I was having very bad chest pains around four years ago after I had just moved from Idaho to Wisconsin. I was there a month when I had to be rushed to the ER at 4 am and was admitted. After being in the hospital for 3 days the doctor finally felt I was well enough to have my gal bladder removed. For the most part the operation went pretty well. Soon after the surgery I developed major BM problems and was told by the doctor these were normal and I just needed to give the surgery some time and change my diet. Six months later the problems were just as bad if not worse. Thats when a lot of my problems began. I started seeing a new family doctor in Wisconsin and he felt that I needed to begin taking medicines for depression. He also felt my blood pressure needed to be addressed. I took these medications for a while and after some other family issues happened I returned back to Idaho. From there I began getting different diagnosis from different doctors and finally went to a GI doctor. He did a colonoscopy and I was put on numerous medications. I was on Asacol, prednisone, dicyclomine,pentasa, Lialda, just for my stomach issues. None of these worked so the doctor put me on Humira. I was a little concerned after I read all of the side effects but at this point was willing to try it since the doctor talked it uo so much–plus I took all kinds of blood work to make sure I was healthly to take it. I was also a little concerned when the nurse that showed me how to take the injections had to read the brochure as she was showing me how to do it. I have been on Humira since the very end of August and have showed very little signs of improvement. About a month ago I began experiencing very odd side effects, but I am on a lot of medications so I can’t be sure what is causing them but I am fairly sure a lot of them have to do with Humira. My biggest problem is that I have been unemployed for over two years and do not have any state assistance or health insurance. I have applied for SS and SSI but was denied. I filed an appeal and it will be heard in the middle of January. However my house is scheduled to be sold at a foreclose auction in February. I have a lawyer handling my appeal but he has not responded to me in over six months. I have explained my situation to him, my main family doctor has refused to see me or call in medications for me since I have an outstanding bill of $450. I was also just notified that I have an outstanding bill with my GI doctor for $2800.00. They want me to do another colonoscopy but need $400 down payment before they can even schedule me a dat. The total cost is %1700.00. I had an appointment with him on December 1st in which I asked him about the side effects that I had been having and was bssicly told that none of them were due to Humira. I will list the side affects that I had and the reason I was given on why I had them
1. At night time my legs will swell up and become very dry. My skin feels like I have had a very bad sunburn and it hurts to even lay in bed. Answer: I live in Idaho and he felt it was due to the climate change. That the air was very dry and causing my skin to become very dry. I asked why this had not happened in the past winters, and was told it is something that can just come on with age.
2. I had went to California for 8 days and the entire time I was there I experienced 2 BM the entire trip. We returned home from our flight at 1 am and by 11 am that same day I was already once again using the bathroom. I had 10 BM the first day I returned, My diet and activites were the exact same as they were in Idaho as they were in California. Answer: When a person travels it can “confuse” the digestive system. It can make some people constipated and cause others to experience an increase in BM.
3. I did not have the usual stomach pain on my right side of my stomach. Answer: Again the climate change and travel was more likely the problem.
4. I developed a major skin rash across my chest. In this rash there are bigger blister things that are filled with white puss. Also on the inside of my leg I developed a huge blood/puss blister. It was bigger than a fifty cent piece. I took a needle and blood and puss poured out of it. Answer: A blister that size was not a side effect that he had ever heard of, and again was likely the cause of the whether.
5. My blood pressure was in the 180’s /115-120. Answer: Again nothing affilated with Humiara. Something I needed to be seen by a different doctor for.
6. I have also developed major joint pains in my knees, lower back, elbows, hands, feet, etc. No explanation given.
Since I began taking medications for UC I have put on over 50 pounds. I have no energy, memory loss, vision loss, liver ensyme issues, anxiety, depression, high cholesterol, and one doctor believed I was diabetic, while the other just felt I was borderline diabetic. I also have an extrememly low level of vitamin D and testosterone. My doctor told me that I need to stay on the Humira and if it did not work than we need to look into Colon surgery. Most of these problems are currently being untreated as I do not have health insurance and my doctors will not call in my medications. I was also taking Vicodin for the pain and again this is not being called in until I pay the past due.amount. There are no- low cost health facilities in my area that can help me. So this really adds up and has put me in a very bad situation. I really appreciate your time and hopefully any advice that you can give me. It is much easier to respond to my email at blint792@yahoo.com Thank you and god bless. Brian
Hi Brian,
I’m very sorry you are dealing with all this without any health insurance at the moment, and I sure hope that changes for you soon.
As for all your symptoms, the ones that I can related to in terms of the humira are the joint pains and the skin lessions, or skin eruptions with the white puss underneath the skin. I had that as well after using the humira.
I eventually stopped taking the humira all together in July of 2009. After just about 4 months of use it became clear it was not working for me, and the side effects were very bad. As a followup, things have become much better for me as I discontinued all mediactions and started the SCD Diet.
Most doctors don’t know that in some relatively rare cases, humira can lead to skin problems(even though many peole take it to help skin problems).
There is a study, and you can search for it on this website in the top right hand corner search box, “skin lessions humira” which talks about this study.
I really hope you can start seeing a doctor soon, it sounds like that would be the best move for you, so all the best to you Brian with regards to getting approved for health care. I can’t imagine how difficult life must be without it for you. Adam
My hands and feet are breaking out into a psorasis type thing, Im on humira for crohns.
Im glad this is just a side effect of the drug, I can stop worrying about the source now.
Id much prefer to be on humira with skin problems (and the occasional flare-up of joint pain in my hips) than not be on it.
BTW, the whole idea of treating UC or crohns with diet is dumb. You may be able to alleviate some of the symptoms, which I do by avoiding a few things, but the disease will plough on regardless, with or without your help. It would awful if someone decided they could suppress the disease with diet alone and then ended up with a ruptured bowel, as I did 12 years ago.
Hi, I have Chron’s disease and started with Imuran which caused cryptogenic organizing pneumonia, i started cortizon for lungs and humira for chron’s same time. now after 4 injections for two weeks, i started having the symptoms of psoriatic form rash on my skin. I’m thinking to stop humira, my dr advised no. i need ur advise and pls tell me how many injections u have taken of Humira before u decided to stop?
I was diagnosed 4 years ago(14 yrs old) with Ulcerative Colitis. They just came to the conclusion that they thought it was Crohns. But had a colonscopy yesterday and its not. No medicines have worked for me yet. Except prednisone. But they dont want to keep me on that. We were gonna tyr Remicade but my insurance doesnt cover it. He wants me to try some sort of injection. He didnt tell me the names of any of them. After reading all this, I am kind of scared.
Hey Cate,
I’m sorry that you’ve been dealing with symptoms for four years now, but you got to realize that the symptoms will end someday. Really, they won’t last forever. were the doctors able to give you a clear diagnosis? did they say you may have UC?
It would be interesting to know if they are talking about Humira as the medication or if its something else?
Keep your head up though, we’re all in this together,
Adam
Hi Adam.
I’m so happy to have found your site. I suffer from psoriasis and psoriatic arthritis. I was being treated with methotrexate and when that didn’t help I had to take Avara with it. They didn’t help either so my doctor prescribed Humira. I’ve been on it for 3 months and when I saw some of your pictures it made me feel better. I am suffering with red hot skin just below my thumbs and on both feet. My doctor prescribed prednizone but it did nothing. No on has any answers for me. The only releif I have been getting is to wrap my feet in plastic bags and smother them with Lanolin. Were you able to just stop the Humira or did you have to do it gradually? The reps for Humira told me I’d have to be on it for life and if I just stopped my flare ups with psoriasis with be 100 time worse?
Looking forward to hearding from you.
cheers,
Steph
Hey Steph, what up!! Sorry to hear you are going through some Humira issues, but im’ happy that the pictures made you feel better.
So, I stopped the Humira cold turkey just about 2 1/2 years ago. My skin issues have nearly resolved completley, and for me since I have UC, that has gotten much better too. The only remaining skin stuff is on the bottmside of my right foot(and its super minimal compared to how bad it was two years ago, it doens’t impact my life at all anymore) As you know, its pretty rare for people who have the “skin lessions” as the one study on this states. So, its not surprising that your doctors don’t really know what to think. So few patients have this strange stuff after medications like Humira and Remicade, so its real rare for even a dermatologist to have more than one patient who experiences this strange stuff.
I hope this helps you out, Take care steph,
Adam..
Hi again,
Thanks for you imput. Sorry if my remark of seeing your pictures made me feel better. I just meant that I didn’t feel alone and that there was someone else out there that I could relate too. I appreciate that fact that you took the time to follow up with me. I’m also glad to hear that things have gotten better for you.
Cheers,
Stephanie
Yo Steph,
NO WORRIES whatsoever about you being happy. I know exactly the feeling you are talking about. It’s actually kinda crazy, but one of the big reasons I even started the website a few years ago was to find out if anybody else had the same side effects as me with the Humira. reason being, none of my doctors knew what the heck was going on. So don’t trip one bit.
take care,
adam
Glad I found this site. I began humira about 2 months ago forcrohns. I can say that it has helped it after everything else has failed andwas looking at another bowel surgery. However, I have also got the strange skin issues. This past week I have developed the red itchy bumps on my head and body as well as on my hands. Weird!
Hey April, that’s great news that its helping your Crohns! congrats on that for you. that’s awesome.
sorry to hear you’re dealing with the rashes and bumps too. but keep your head up! it sounds like your making some great GI progress which is way important!
So I have tried the prednisone and most of the oral medications they usually treat UC with but I had a terrible relapse while on them so I started to get remicade infusions every 2 months for about 5 months then I had a allergic reaction to it once where I swoll up and could no longer breathe. So my Gastro prescribed me Humira and I am waiting on recieving them but to what I have read it seems like the side effects aren’t worth it. The only option I have been left is the colon removal surgery and I am only 17 so my parents are in control of that decision but I just wanted some oppinions about the whole Humira effects and what not. Thanks for your stories. SCREW UC!
Hey Gabe,
ONe thing you should realize for sure, is that this post “Side Effects of Humira” definitely DOES NOT mean that everybody is going to have these side effects. If that was the case, the drug wouldn’t exist. With that said, if you do decide to use it, I hope it works out GREAT for you, and take car my friend,
Adam
Hi Adam
I’m so pleased to have found your website. I’ve had crohns for approx 22 years now and for the last 15 years have been drug free, how lucky was I. But unfortunately had a really bad flare last year, Rushed into hospital and since then I have been prescribed all the usual drugs and they either haven’t worked or I could not tolerate them, usually liver problems. So in Oct 2011 I was prescribed Humira. I know 2 people that have been on this drug for years with no problems, so I thought bring it on. I couldn’t wait to start is. It did help to elevate the symptoms which was great but then I started struggling to move,that was in mid December strange I thought but didn’t make the link with the Humira. Then I noticed a couple of raised pus filled spots/boils that we’re really painful. Then about a week later, what can I say, I was covered in these strange things. I was really worried went my GP was no help said it was a ‘fungal infection’ gave me some steroid cream and set me away. How I was gonna apply this to all the lumps on my head and IN mu groin I have no idea. Anyway to cut a very long story short I have stopped the Humira currently the lesions are getting worse but at least I have an appoint with a dermatologist. Hopefully they can give me something to get rid of these things. I have decided I will not take Humira again and will try and cope without any medication at all. I want to thank you so much for this site, it has answered more question than anywhere else and I am pleased to hear that your skin is clearing up. That has helped me to see light at the end of the tunnel. Again many thanks
Hi Janice,
I’m so happy that the site has been of use for you. As you might not know, one of the reasons I started the website several years ago was because of my strange Humira side effects. I thought that since my doctors had a hard time understanding my symptoms, maybe other people with the same symptoms could help me out. it turns out, quite a few people deal with similar stuff as well.
I wish you the best with your decisions on how to move forward. In the summer it will be 3 years since I last used Humira, and I am pretty confident it was a great decision. With that said, I’ve got a very close friend who uses it for several years now with great results for a different arthritis related disease.
Cheers to you for another 22 years of moving forward with your life, and stay in touch!
I wish you the best,
Adam
Hi Adam,
Thankyou for leaving a diary on your Humira experience. I am 34 years old and was diagnosed with Crohns disease about 3 1/2 years ago when I needed an emergency re-section, I have been getting the same pains again for about 6 months now and have had a CT scan that shows that my bowel is re-infected and my consultant has offered either Humira or another re-section as other medications haven’t worked or I don’t seem to tolerate them. I have read almost everything I can find in the UK regarding Humira and none of it seems to be very positive I would appreciate some feed back as to what route to take I only have 3 weeks left to make my decision
Thanks again Julia
Hi Julia,
First off, thanks so much for finding the website and placing a comment:).
As for your current health and whether to try humira or not, that’s definitely a personal decision. I myself have chosen to treat my health with diet and lifestyle changes & with reducing stress. All some basic things but its working for me. As for Humira, I know of one person who is using it successfully to treat his Crohn’s disease, and I have a personal friend who uses it succesfully to treat his arthritis. The side effects that I had from the Humira are very rare, and happen in just a very small percentage of people who try it according to clinical studies on Skin lessions. Other than my experiences though, its hard to say, I think you should just ask yourself and wait for your response to the question of “do i want to try another medication”. you can check out a great crohns website called http://www.crohnsdiseasesn.com to meetup with other Crohns patients and find out defintely more on that.
Hi Adam
I was diagnosed with RA about seven years ago and I am still not sure if this is correct
Unlike most people with RA, I went to bed one evening (just fine) and woke up nearly paralized and in such pain that I can only describe it as horror!
It was so bad that my wife had to bathe and dress me
I bounced to several different doctors
I really thuoght that I had injured myself somehow and had spinal injury or something
Finally i ended up with a rhuemitologist and have taken Embrel,Remicade,Prednisome,Methotrexate,and was an experimental patient with a drug called MRA which is now on the market as Actemra now, along with many other drugs during this period to no avail
I just took my first injection of Hurira this this evening and I am quite concerned with everything I have read from several sites
I like you was on several strong pain killers (many of them) and as you must know, they just don’t work after awhile so I stopped them cold turkey!
I am 53 years old and the horrible pain is now bearable but seems to be progressive getting worse with time but none of the drugs seemed to help and I do have some joint damage
It seems that the relief I did encounter was more natural over time than anything
I have worked in heavy industry all my life including foundry,heavy metals,pure silica,and aromatic chemicals and I am sure this has had its toll on my immune system!
I also have had my share of gastrointestinal problems
I don’t mean to rattle on!!!
I am just very concerned about starting Humira! (as cancer is already very prevelent in my family)
Thanks
Jim
Hey there Jim,
I can most definitely understand your concerns about the medications taking their toll on your body. Youre not alone with that thinking.
Here’s some good news, a good friend of mine is taking Humira now for several years with great resutls, and no side effects. he’s got arthritis, not UC.
One thing that’s interesting to me, is how you mention gastro issues as well.
You might want to consider trying some diet changes to see if that helps out there and also helps with the joints. For me, I’m now medication free for a year with my UC(which is a pretty big deal to me and my wife!!) and I’m feeling great. To the point where I now can go to workout freely, and do pullups etc ithout any issues. The diet I follow is outlines in some more details here: https://ihaveuc.com/the-diet
take care Jim, and I wish you and your family the best. stay positive, and remember that things can and will get better
Adam
Dear Adam,
MY STORY and PROBIOTICS (possible healing of root cause of illness – I hope)
Your story and especially the road to recovery you took is very imspiring. I don’t have Chrons disease, but I have a similar story of being badly handled by the conventional medical world. Primarily as a result of little to no activity and weight gain I developed high blood pressure. After years of not taking medications regularly, my doctor gave me a 45 minute lecture telling me that I wasn’t coming in for testing regularly, needed to take meds regularly, and that I was imminent for stroke. So I then took regularly the medications. I have to note here that my fasting blood surgar was tested at 91. Six months later it skyrocketed to over 390. I was diagnosed with diabetes.
I found this disturbing because I had previously changed my diet to low fat and was exercising regularly, and had lost a good amount of weight. So why did my health go south. It turns out that high blood sugar is a side effect of high pressure medications. From researching the Internet sites, the medical community (although none of doctors) knew this. These websites recommend continuing the high blood presure medication, and increasing the diabetes medications. (diabetes meds increase heart desease significantly). Also it causes intestional problems, which can lead to arthritis. Long story short I discovered books and information on Internet to reverse the diabetes, and upon stopping the high blood pressure medications my average sugar levels went from 503 to 142. NO MORE MEDICATIONS FOR ME UNLESS SHORT-TERM EMERGENCY.
LINGERING DIABETES MEDS SIDE EFFECT: Often in the mornings the joints of my hands are extremely stiff and painful to move for at least a few minutes. This last Christmas was a very bad attack of this.
Recently, I read an article on Dr. Joseph Mercola regarding the use of PROBIOTICS and how when used in a food form, i.e. sauerkraut (sp??)it can more than a 100 x’s the useful bacteria as a supplement would have. Friends of mine have told me of how different food allergies have been eliminated due to the regular use of probiotics.
Dr. Joseph Mercola is a conventionally trained doctor who after years of medical practice began to realize that the med system is geared toward system control, instead of eliminating the root cause and making the disease a non-issue. He also has a video approx. 9 minutes on u-tube called “Death by Medicine”, wherein he states that starting one medication often developes “side effects” which are treated as new onset of illnesses, and then these illnesses are also medicated. So it becomes easy to go from using one medication to over 20 medications after a number of years. Many of our senior citizens are in this situation.
My journey to health is not over. I also incorporate green smoothies in my daily diet. Google this when you have a chance. The smoothies are very energizing, and I get colds/flu less often. They contain a combination of ORGANIC dark leafy greens, fruit, sometimes herbs (basil, ginger, tumeric, etc) and water. Placed into a blender and blended.
Hi to all,
Just came across this on the net and found the first story really interesting. I have had bad ulcerative colitis for the past few years and after popping many a tablet I started on infliximab and reached my fifth infusion and had a reaction to it. Then my consultant suggested Humira. Ten days ago I started on this drug, four pens, two in my stomach an two in my legs. Dreaded self injecting, the humira nurse showed me what to do. Stomach injections stung like hell but nothing prepared me for the pain injecting into either leg, it was horrific I did my first leg and the stinging and burning was unbelieveable, nurse had to do my other leg. Almost immediately as the day went on I had bad pain down both legs, lower back and upper body. The second and third day I could barely walk my legs stung, burning feeling and joint pain. This went on for several days with no explanation from my consultant only to see how it went. I am now on difene and anti nausea tablets and my next two injections are due in the next couple of days. Still aware of pain everywhere legs worst affected. Have no idea whether to continue with this treatment or not would appreciate all suggestions, terrified now something else has been triggered off in my body.
Hi Adam,
I just found this thread, and I believe my daughter may have experienced a very severe reaction to Humira. The doctor’s neither agree with, nor acknowledge, my belief on this issue. My daughter is 17 and has had Crohn’s all of her life. To make a very long story a bit shorter, she tried Humira 4 years ago, after 5 years on Remicade and many other drugs before that.
With the very first dose of Humira, she developed a small rash. I questioned it, but the doctors said it was unrelated. Two doses later, she was covered in rash. We stopped the Humira at my insistence. Unfortunately, the rash spread and progressed in severity in spite of multiple treatments. She developed severe eye inflammation, nerve problems, lost most of her hair, and developed weird nodules on her scalp. Her gums swelled up to the point they almost completely covered her teeth. At one point, their were 12 different specialists involved. It all got worse and worse for 5 months until she was finally hospitalized for 8 days. During this time she was wrapped in plastic wrap, cloth and a plastic body suit.
After her release from the hospital, it took at least a year before she could go without multiple daily skin treatments. I have always believed this was a reaction to the Humira, but the doctors do not agree. The doctors say it was all just part of her auto-immune syndrome. Who knows? There is no way to know what really happened, and no one can predict a person’s reaction to a given medicine. I am sure that Humira helps a lot of people. But that is our story.
Hey there C-Francis,
Way sorry to hear about all of this. That sounds like a very tough case of humira side effects. I think I know exactly what you are talking about in terms of the scalp nodules too. I had strange stuff going on up there for a while too with little blister like ruptures with strange white/clear puss coming out when they popped. it was awful. i wish you and your daughter the best, and I hope she can get on with her life in a normal fashion. My guess is that over time, there will be some more studies about some of these rare side effect cases that are related to Humira so at least more people will understand that they are not alone.
I was given Humira for Crohn’s disease in 2005 and I had an adverse reaction. Forget how painful it was, within a few days, I had to be kept in ICU on blood transfusions b/c I was shitting pure blood out my butt for a hospitalization that was almost a month long. i was put on a tons of other drugs to keep me sedated b/c i was trying to escape and was uncooperative, which was a theme through my staycation in the hospital. my official dismissal was hospital psychosis and go home to die when my weight was so low on NPO (no food by mouth — feeding tube stuck in my throat!) that it was futile to try to IV me (even out of sites on my feet). i didn’t die, and have been repairing. the cannabis plant saved my life, and saved my colon, which the young, hip colorectal surgeon was the most supportive and informed about this alternative treatment pioneered by Dr. Juan Guzman in Spain and Dr. William Courtney in the USA. well, it is a bitch b/c of the lack of modern standardization and crazy laws and gangster culture, but the results for me spoke for themselves. it’s not for everyone, but i was at a point were steroids, immuno-suppressants, and immunomodulators all failed, with 20+ years of disease. I was and continue to be shocked that a modern solution hasn’t emerged from the cannabis plant, which I now have learned to juice raw, which has no psychoactive effects but tons of anti-inflammatory effect. Google it. I hope this helps you or a loved one. There is always hope, itself a powerful medicine.
Reading this blog has upset me terribly. I have been on Humira for 2.5 years for UC and have been thriving – it has changed my life completely. I am in complete remission from my UC symptoms. I feel really well and am so happy with the result until………..
recently I noticed a small rash on my right forearm – I treated with Elecon but it seemed to make it worse so I stopped. I saw my gastro dr this week and he confirmed that it was definitely a side effect of the Humira. He has also commented on the past on my skin pigmentation on my face which I put down to age (48) and sun damage (I live in Aus!) but he feels that it is probably also in part to the Humira. the rash on my arm is small and not at all itchy but I am now terrified that this is the beginning of the end with my fabulous run on Humira.
I have also noted that I am suffering hair loss and dandruff in the past 6 months or so and wondering if this is also thanks to Humira. The thought of coming off the drug is almost as terrifying as the thought that my rash could spread much worse. Has anyone actually found anything that helped?
Hey Rosie,
One thing I did to help out with my flaky scalp and itchiness there was to start using a tar based shampoo and I actually still use it to this day, even though my scalp issues have resolved. But that stuff is what I was using at the beginning when I noticed the scalp problems right after starting the humira. I hope you are just at a small bump in the road and you can go back to a nice normal lifestyle soon! –Adam
Hi
I am so glad i have found this site. I have been on Humira for nearly 4 years – about six months ago develop this terrible joint aches – felt like I was 80 or had ran a 10km marathan. I was taken off Humira but the pain was still there so I was put back on Humira along with Methertraxate. This was going well until about 8 weeks ago started getting chest pain and a numb face. I am now off Methertraxate but in the last two weeks have develop this terrible joint pain again. I see my gasto on Tuesday and after reading the posts I want off Humira!!!! I take it for Crohns but have had no problems with crohns for nearly four years – thanks again!
Good Luck Kristy, I hope your doctors can get you squared away, I think I know the chest pains you’re talking about, they are tough, but just hang in there, and you’ll get through it and back to normal soon!:)
I have psoriatic arthritis. Started with psoriasis, lead to arthritis. Humira has completely healed my skin. I feel free. BUT, have developed severe neck, shoulder, finger pain, psoriasis flare up and headaches when I miss a dose for 1 to 2 weeks because of a cold or flu symptom. It seems that my body is dependant on it now. It sounds as if it clears skin to those of us who have skin issues, yet causes skin reactions to those who use it for other diagnosis. Mine was prescribed for psoriasis. I have gained 20 lbs because I have stopped working out due to the joint pain. I have also developed anxiety to the point where I continuously pick at my cuticles. I also have a chronic productive cough that has lasted 2 months. If treated with antibiotics, I have to skip my dose of Humira. Dont know if the its worth going through the severe joint pain, psoriasis flare up and headaches while I take the antibiotics to clear this cough. It seems that Humira does have quick withdrawl effects for me
The pictures posted of your hand and ankle could be mine. I have UC diagnosed 10+ years ago and have been on remicade since 2010. Now starting to have the joint issues as well. Thanks for posting this site. I thought I was the only one with UC and psoriasis!
I have been on Humira for almost 2 years now and the itching and redness not just on my feet, arms and legs. I have it in other places that I really dont care to mention. I have seen the ER doctors, my GI doctor, skin doctors, and so many other doctors over and I have even called Humira over it. I have been told not to use soap, been given every kind of lotion and potion I swear and nothing works. I am so tired of feeling like I am loosing my mind here. I thought I was the only one going through this to tell you the truth. I was on Remicaid for over a year but my veins just couldnt handle it anymore so my doctor felt that humira was my last hope. I have Crohn’s Disease and then I was diagnosed a year ago with IBS. I have changed my diet more times than I can count mainly due to high blood preasure and other medical issues since I was diagnosed with. Humira has told me no one has told them about anyone else having major issues with rashes. I took pictures of what my inner legs and arms look like. It is not pleasent and I have to wear pants and long sleeve shirts all the time and right now I live in San Diego, CA getting ready to move back to Jacksonville, FL.
Any help, I would love it please. I am tired of feeling alone here.
Hey Wendy,
So so sorry you are going through this with the humira. I know exactly what you’re talking about as I was in a very similar position quite some time ago.
I’m not sure what Humira is telling you when they say they have not heard of anyone with the side effects you mention, there is actually a study which talks exactly abuot this. I emailed with the lead scientist/doctor who conducted the study and it seems that I also had the same things going (and it sounds like you do too(:
But that’s alright. Just knowing you’re not alone with the side effects I hope will help you out.
I want you to read this post I did a while back. There is a link in there (there’s actually quite a few different links) but one specifically with a link to the study I mentioned above. It’s a PDF file you can download.
here it is: https://ihaveuc.com/psoriasis-and-eczema-following-remicade-or-humira-use-for-ibd-patients/
As for how did I get better from the skin lessions..??? I stopped my humira use under the advice from my GI doc, and now I use the specific carbohydrate diet among other things to control my ulcerative colitis naturally, and I’ve been medication free for the majority of the time after making these changes (save a few rounds of prednisone for short amounts of time due to flares that got nasty quick, and that were also controlled quick)
take care,
–Adam
Hi Adam
I stumbled across your site whilst searching side affects of Humira. I started Humira 6 weeks ago. Week 1 had 4 injections in my tummy and besides a bit of soreness around injection sites, suffered no side affects. 2 weeks later I gave myself 2 injections in my tummy. This time I be ame really itchy everywhere and noticed not so much a rash but small dots on my skin. On Wednesday this week I gave myself 1 injection. The I jection site is still sore 3 days later and I’ve got terrible lower back, shoulder and hip joint pain. Then this mornng I woke up and could hardly move my right arm as the elbow was swollen. It’s better now, 5 hours later, but my little and ring fingers of my right arm and side of my right hand are tingly and numb.
Could this be from humira?
Hi Sharon,
If these type of symptoms you described are ones which you have never experienced before, then I would guess that they are likely part of your reaction to Humira. Much of what you are describing is similar to what I went through starting a few weeks after my first injections of the medications. I when you mentioned the “could hardly move my right arm…” that sounds nearly identical to what I remember.
I’d suggest you mention all this to your doctor, since its been a few years now since I tried Humira, and the drug is increasingly being used for people with IBD, there may be much more in the way of people having adverse reactions to it, and your doctor might have other patients with the same reactions. But since this is so rare, he/she may not have this same experience with others he/she treats.
I’m sorry you’re dealing with the pain/joint/lower back pain stuff, its really hard to handle, but good news is it often clears up/ goes away if you decide to stop the humira.
-Adam
I guess I should have researched the side effects of Humira before I let them give it to me. I was told I had a bad case of plague psoriasis which I called pustular since there was pus looking bumps on the bottom of my feet & hands. It got worse since I was peeling tons of skin off my feet every night. My skin grew that fast. I took 6 Humira shots and now I am covered in a very itchy rash. They put me on Enbrel and I stopped this after 4 shots. I was sent to specialist for psoriasis and they did say it was from Humira but didn’t go into it any further. I have starting missing work due to not being able to wear clothing sometimes. Of course I have tons of creams. I do not have any joint pains, thank God. So when I go back to the Dr. Is there any other drug I should stay away from that could make it any worse? Is there any drug I should suggest? Since I feel the Dr’ are in the dark or act like they are in the dark. I started this drug thinking it would help my psoriasis but the Humira just made look like I have Leprosy and constantly scratch myself. I did ask the doctor what some of the side effects with this drug and was never told I could break out and be so miserable with this rash. I have read your blog and do you have anymore suggestions of how to help with this rash? I have been on 2 rounds of prednisone which they keep saying it just makes the rash worse once I am off steroids. So my question is: Is this a worst case of psoriasis or is this some different rash? Is there some other sites I can go to that you have found t o get more information? Did you send any information to the FDA? Since I was told Humira would probably call & check on me to see how I was doing on Humira ( they have not) I will be contacting them because I am very angry about this situation knowing they were probably already aware of these side effects. I am a very persistent person am like a dog with a bone when I feel there is a cause. I will appreciate your information.
Hi Sharon,
I’m sorry you’re also dealing with the strange side effects.
Here is a link from this site which you should check out. Also, within this link, there’s a link to actual study that the doctor I communicated with allowed me to post on the site. Once you click it, you’ll be able to download the whole study on what you’re talking about, and I’d suggest you print it up and bring it in to your doctors since they probably have never read this one and it might be a great learning experience for them.
https://ihaveuc.com/psoriasis-and-eczema-following-remicade-or-humira-use-for-ibd-patients/
As for moving forward, I have had massive improvements to my skin deal since getting off the humira about 3 years ago now. But since I have ulcerative colitis and that is why I was prescribed the Humira in the first place, that sounds a bit different than your personal situation, so its hard for me to say what else might help you out with psoriasis moving forward. The diet changes and lifestyle changes that I made I have to attirbute to my control of the UC, and no matter what you end up doing, most defintely great idea to contact the FDA and let them know what happeend to you. I myself did not do that, but that is for sure what they say they are there for.
Keep us posted and definitely read the link above and the study that is within.
I wish you the best Sharon.
-Adam
Hi Adam,
Iam about to start Humira next week for Crohns / Colitis as well. I am terrified to be honest. I was on pretty much every medication out there and nothing has stuck. Each drug only masks my symptoms for 2-3 months at a time then stop working. I already tried Remicade, and it was a horrible drug for me personally. WAY to many side effects, and in the end just wasn’t work it. I am reading a lot of your experience on here with Humira… needless to say I am a little freaked out !! I just pray something helps me. I have tried a lot of different diets as well.. nothing seems to be working and I do not know where to turn at this point :( Any suggestions ??
Hey Alicia,
One thing that I would suggest you do is ask your doctor who has prescribed the Humira to you how many patients she/he has with Crohn’s colitis who are using Humira, and then ask what the results have been like. Of course everyone is different, and its very rare that you’d end up having an experience like the one I had. Asking the doctors about their own patients and what their experiences have been is something I’d actually recommend for any patient with any medication.
I wish you the best:) and please stay in touch.
-Adam
HI,
I have UC and took Remicade for 5 years with seemingly good success. During the 6th year I began to experience joint pain and lung pain. Long story short….after 8 months of excruiating joint pain and me saying “this is from the remicade” my GI finally sent me to a rhuematologist. He confirmed that remicade had caused drug induced lupus and triggered psoriartic arthritis. I have spent the last year trying to figure out how to control the psoriaritic arthritis. Prednisone, methotextrate, no luck yet. NOW….he says Humira is my only choice. While there are differences between Remicade and Humira, I think fundamentally they do the same thing. Why in the world would he think that it will help?? I am trying not to make a decison based on the amount of pain I am in, and this site is a huge help. Has anyone else gotten psoriartic arthritis from Remicade?
Thanks for any help.
Karen.
Hi Karen –
I have been on Remicade for 6mos now and have psoriasis and arthritic symptoms, too. Doctor wants me to switch from Remicade to Humira – have you?
I had my loading dose of Humira on Wednesday and for the past two nights I’ve had trouble sleeping because my joints hurt and feel swollen, All my joints even my toes. Has anyone had this reaction so quickly? If you have does it get better with time?
Thanks,
Robin
Took Humira for several years and quit after developing Lupus, Latent TB, Psoriasis, Surgically removed Infected Growth on Adenoid, Liver Damage and Migraines. The drug was supposed to treat my severe Crohns Disease. I am so worried about others taking this drug and think a lawsuit is in order to stop future people from suffering. I am unable to treat my Crohns due to the liver Damage, unable to treat the Latent TB because of liver and it’s is a cyclical cycle.
Ty much for your post. I just had a couple questions, how did the lupus and arthritis present originally?
geez this post has scared the living daylights outta me! i will be starting humira next week for my UC because nothing has put me into remission yet. i am hoping that i don’t get side effects but i have with all the other meds i’ve tried.
Hi, iam so glad iv come to this web site, to know now iam not alone. Mr doctor said I had psoriosis I had a feeling it was to do with medication iam on humira have been for under a year due to crhones disease, this rash is getting worse it’s in patches all over my body my hands and feet are raw I will see if I can make an appointment ASAP with my consultant. To come off the jabs as I can’t go on like this :( thanks for all your advice and your honesty :)
Hang in there Sarah, it’s gonna get better. Definitely talk with your doc about what’s happening, they may have some insights for you about ways to get past the strange skin stuff, as its been a few years since it happened to me, and maybe there’s some news ideas about getting past it now. It’s gonna get better, most definitely:)
-Adam
Hi Adam-
My husband seems to have a similar story as yours. He was diagnosed with severe pancolitis in his entire colon (still not able to determine if it is crohns or UC) this last summer. His situation was unique though because although he lost 50 pounds in 6 weeks (only time he had symptoms other then once a day loose stool) he still was only going to the bathroom 2 times a day when symptoms started and 5 or 6 times a day at its worst. He was hospitalized for 16 days. After not responding to steroids they put him on remicade, but took him off after 3 treatments due to too many remicade antibodies. We have an appt. today with the GI to disucss options which I think will be Humira or surgery. Someone we know strongly recommends the Ayurvedic diet. Have you heard of that and/or had any experience with it. It seems there are a variety of recommended diets which have the basic component of removing gluten, dairy, coffee, beer, processed foods, etc.
I started the Humira about 3 years ago and ended up at University Hospital in Iowa City, Iowa seeing specialists in 5 departments. Mainly for skin staph, some kind of weird eczema, my immune system was out of whack and my adenoids grew to a very immense size (had to have them surgically removed), sinus infections that would not stop. Used the prescription skin creams and gels with little results. The UVB therapy did help a lot. I go to a tanning bed when things start reappearing (as they are now). My Crohns is much improved with the Humira. I was on Remicade infusions for about 10 years. They let me go off it after surgery (bowel resection at ilium and sigmoid colon due to a very interesting fistula path of destruction) and then had to restart the Humira after I became symptomatic again. Had a terrible allergic reaction during an infusion to Remicade the 2nd time I had it (after the break). After 10 years. Go figure… I have also been having a few joint issues. I don’t know if it’s Humira or my age.
I have been on Humira for about three months for Ankylosing spondylitis. I am sorry to hear so many you have had bad side effects. It seems strange that a drug given to stop painful joints can cause the same thing with other patents. I came across the site feeling sorry myself because i believe the Humira has caused rapid hair loss. My hair loss seems insignificant after reading others stories. Good luck to you all.
I am indebted to all who opened my eyes to the side effects of Humira, Remicade etc. I have been suffering from the dreaded UC disease for the past 25 years or so. I have had terrible flare ups on and off. My business requires me to travel extensively to Asia and other destinations. About 10 years ago while in China during one of my worst flare ups, a Chinese friend DRAGGED me to a herbal doctor. After an examination he prescribed “Perilla” oil, I really don’t know if this helped (I was taking the oil as well as my regular medicine) but after taking it for almost three months I was in absolute full remission for probably three years to the point that I stopped taking the western medicine i was given by my Gastro MD (BIG MISTAKE), then I had another flare up. Having checked on the main ingredient of Perilla oil, I found out that it has a high concentration of “Alpha Linolenic Acid”, rather than going back to taking Perilla oil, I switched to “High Lignan Flax Oil” because it has a higher concentration of the acid. in my case this really helped and this is how I take it. When in semi remission, every night I mix a table spoon of the Falx oil with a table spoon of Psyllium powder with water. When I have the flare ups I repeat this every 12 hours and in my case this procedure has helped a lot. I hope this information will help.
Hi Adam
I can’t seem to find an update as to what ended up happening with your skin…did it clear up?
I had the same thing happen to me after taking Humira (which I stopped about 4 months ago when the connection was made) – my hands, feet, underarms and scalp (I’ve lost 3/4 of my hair) are all very bad and have been for 6 months. I’ve been seeing a dermatologist and tried about 10 different creams, with only super high dose of steroids helping. It’s at the point I had to switch to a part time job and even 15 hours a week is a struggle and can’t even wash my own hair some weeks because my hands bleed. I’m starting to think this will NEVER go away.
Hi Kelly,
As an update regarding my skin, yes, things have cleared up (thankfully).
It did take several months after I stopped taking Humira, but things did come around and it is no longer a problem. I’m for sure hoping it never comes back on its own, but as of now, things have been fine and on a side note…I’ve heard from many others who have had things resolve in a similar fashion as well (without any additional creams or medications etc…)
-Adam
Adam,
I am currently suffering from “psoriasis” which I put in quotations because that is what my dermatologist firmly
yelled at me when I told him it was caused from my Remicade infusions. I have Crohns , had it since I was 14 and I am 21 now. It’s not even that bad but my GI insisted I go on Remicade. So like a dummy I did not do my research before hand. Anyways now I am suffering from severe psoriasis. My feet are so bad I can’t walk some days. They look like I have 3rd degree burns. My legs have finally cleared but the palm of my right hand is still pretty bad, it actually looks just like your hand from the picture above, just a little worse. I’m working on finding a new derm, any suggestions? I only had 3 infusions of the Remicade because I stopped immediately after I saw these skins lesions. Do you think It will go away soon? I had my last infusion the day after Christmas and NEVER again. Thank you so much for sharing your journey through this. Honestly the biggest blessing I have yet to encounter. I often feel like there is no hope and not one person understands.
Thank you , Best wishes for all of you!
-Taylor
Hi Taylor,
I’m super sorry to hear you’re going through this stuff right now. I know how tuff it is to see your skin in that way, but you’ve got to keep your head up, there’s a very good chance it will get completely better or at least MUCH MUCH better.
There’s another story on this site you should read, here’s the link:
https://ihaveuc.com/psoriasis-and-eczema-following-remicade-or-humira-use-for-ibd-patients/
Also, within that story there’s a link to the actual medical study talking about all this which you should read and also print out for any new doctors you see related to these problems. As for finding a new derm doc, I’d suggest to try and find one who has some previous experience with helping people in your situation who have used the biologic meds and had these adverse reactions. if that’s possible, he/she might have some first hand experience on treating it.
As for me, the skin issues resolved nearly completely within 6-12 months after I discontinued the use of Humira.
Again, keep your head up, its very likely things will improve tremendously over time,
Adam
Hey,
I am from the UK and just decided to stop taking Humira for psoriasis. I had two loading shots on 28th December 2012, one shot a week later then two following shots two weeks apart. I made a decision NOT to take the fifth shot because I started getting some strange side effects. I got the little pimples on my scalp, sciatica down my left leg, lower back pain, feeling weak, probably some neuropathy (i still have a wierd tingly feeling on the left side of my face) and anxiety/shaking. Very very strange stuff. The day I injected I had bloody diarrhea (i.e. with blood in it)!
I think we trust big pharma to know what they are doing. I think we are sometimes so desperate to get better that we will just cave in and put in our bodies what we are told to. My dermatologist advised me of the tuberculosis issues, potential for multiple sclerosis etc but said they were all reversible if Humira was stopped. I certainly hope so.
It’s been 21 days since my last injection and only now am I feeling a little better. The sciatica remains but not as worse and I can still feel the left part of my face not feeling quite right. Apparently it takes about two weeks to get out of your system although I think it could be longer than that more like a month or two.
I have read so many stories about the side effects of Humira and a lot of the medical profession will say – “that’s not a typical side effect we see” but we know our own bodies, we know how we feel and we know when something is just ‘not right’. I knew something was not right.
For me, I hope that no permanant damage has been done that will come back to bite me in a couple of years time.
Hey Adam,
I’m mighty fine to have come across your page, through a random google search. I’ve had UC for most of my life, and after having my colon removed, instead of this condition improving… it became crohn’s. Go figure.
Like you, I’ve tried essentially every drug on the market… however, because I also have a history of cancer (hodgkin’s lymphoma) I never considered Humira (or Remicade).
Just today, however, my gastro decided that he believes that the benefits of humira would outweigh the negative side effects.
After a lot of convincing on his part (& that of his nurse) they conviced me that this was a good idea..
I was still sceptical.
I came home, and re-read the list of complications & side-effects that I’ve read so many times before.. and again I was on the fence about taking a drug like this.
Finally I very accidentally came across your page, and you’ve officially convinced me that this drug is simply NOT a good idea.
I don’t think it’s a good idea for most people, let alone someone with me who has a history of lymphoma, and therefore a MUCH higher risk for developing lymphoma again.
Thanks for your detailed blog bud, I really appreciate it!!
ps. Once upon a time (appx 2 years ago) I came across some information on a UC / Crohn’s website in which people were ranting about having had success with a drug that was initially developed for travelers diarrhea. This drug was not available in Canada, so I eventually stopped asking my doctors about it… and in the process I’ve forgotten the name of this drug.
Does this sound familiar to any of you?
I’m not just one of those who believes any random thing I read online, but this drug actually sounded very promising on any website I saw it listed.
Thx again :)
Hey Davey,
Way happy you made it here. As for the humira, I do have to say that since writing the post a long time ago, there have been many folks who’ve had some good results with it, and of course others who are not on that same page. Just like most treatments/meds etc… but anyways, way happy to hear from you.
As for the medication you mention at the bottom of your posting…I am not sure which one you are referring to I’m sorry to say.
I wish you the very best with your Crohn’s. My uncle like you was initially diagnosed with UC but later with Crohn’s after he started having surgery. So you’re most definitely not alone.
Take care,
–Adam
could you be thinking of rifaximin?
http://www.nlm.nih.gov/medlineplus/druginfo/meds/a604027.html
oh gosh. i posted my concerns about starting humira back in december. i was right to be terrified at the time.
i had my loading doses and that was it. after the first day, my hand was frozen for around 5 hours. this happened a few more times.
the thing that alarmed me the most was about a week after my humira shots. my belly was all of a sudden extremely distended. i had tons of gas and bloating. this was weird because i have never had abdominal distention with my UC. the pregnant gut wasn’t going away. about a week of this and then bloody diarrhea starts. LOTS of blood. terribly high fevers, too- around 103 F for days. i had no clue what was going on but ended up getting so hot one night that i couldn’t get off the toilet. i was so weak and in so much pain from the cramping. my parents took me to the ER and we found out i had C. Diff. the doctors at the hospital (about 7 total) think it’s from humira weakening my immune system and then triggering a C. Diff. infection. humira was the only new medication i started at the time (and was the only medicine i was on). the doctors said that i was smart to not take the second dose because it probably would’ve killed me with how severe my C Diff infection was. i developed paralytic ileus which can cause colon perforation and toxic megacolon.
anyway, just wanted to say that i 100% regret taking this poison. i just got off the vancomycin and am hoping the C. Diff doesn’t come back.
I was prescribed Humira for psoriatic arthritis. I had been on Embrel before which worked well on arthritis but not skin. Then I got an upper respiratory infection which lasted a year. So, I went off Embrel.
A year later I was prescribed Humira by a new dermatologist. Worked great on skin for about a month. Then I broke out in hives. Then I started getting new psoriasis in places I never had before. It was like the psoriasis had to come out so it found new places- my shins, ears arms and chest. I stopped Humira but psoriasis remains in new areas and I have incessant itching. I feel like Humira really screwed me up and it’s not getting better after being off it for 6 weeks.
These drugs scare the daylights out of me. I wish I never took them. My doctor said maybe I should try another biological drug and I said “no way!”
Has anyone read the New York Times article published around 2/2013 by Investigative Reporter Suzanne Meadows, “The boy with a Thorn in his Joints”. This story talks about her son being diagnosed with juvenile arthritis, and while using Conventional Medical methods, anti-inflamatory drugs, along with with methotraxate her son became progressively worse. The rhemuthologist want to increase the medication by 50%. It had progressed so much that her 3 year son had trouble going to the bathroom, engaging in sports, and getting out of bed, etc.
EVENTUALLY, S. Meadows decided to listen to her sister’s advice by seeking the advice of an alternative health care provider. This provider told Meadows that perhaps her son had what’s know as a “leaky gut syndrome”. This is often caused by bad diet, harsh medications, stress, etc. She was advised to avoid certain foods, i.e. dairy, gluten, etc. and to include PROBIOTICS and Chinese herbs called “FOUR MARVELS”. She was told that she should see improvement within 6 weeks. Meadows stated that six weeks to the day she was greeted by her son who had gotten out of bed on his own and who told her that “his knees no longer hurt”, and then he went running off into the other room to have breakfast.
This report generated well over 600 comments by the readers. What I found encouraging is that many of these commentors had the same story of progressively worsening arthritis despite medical intervention and remission occurring as a result of a nutritional approach.
Nutritional approaches are not promoted by the medical communication. Meadows sparked a lot of discussion even on many of the arthritis foundation websites. However, most comments on these websites belittled this approach and made statements indicating that they felt that the boy had been wrongfully diagnosed. The boy had been to approximately 3 doctors.
PLEASE PLEASE READ THIS ARTICLE. Her story was also aired on the Dr. Oz show recently (approx. either late Feb or early March /2013) It’s entitled something to the effect: The Disease your Doctor can’t Diagnosis. I’m using these approaches, and the arthritis is lessening.
God Bless you Karen for sharing this, as someone who also had to learn the hard way I know that sadly not everyone is ready to take responsibility for and educate themselves about their mental and physical health (yes they’re intrinsically connected) instead of depending on a doctor/diagnosis, looking for a magic (often toxic) pill to replace common sense, emotional resilience and healthy habits. http://www.theatlantic.com/magazine/archive/2010/11/lies-damned-lies-and-medical-science/308269/?single_page=true
Depleted soils and modern diets account for 80-90% of us being magnesium deficient, supplementation is known to end seizures, muscle and joint pain, depression, ADHD, insomnia, heart and BP issues and a long list of other health issues http://drcarolyndean.com/. B Complex vitamins are also lacking and crucial for mental and physical well being.
“Let food be they medicine and medicine be thy food”-Hippocrates
Pingback: Humira Side Effects Part Two
Change the diet by cutting out gluten and lactose. Increase Vitamin D and Magnesium. If you can get it, drink 1 liter of raw (unpasteurized) camel milk every day. Camel milk has anti-inflammatory properties and has been proved in Israeli, Egyptian and European studies to be very effective in treating inflammatory diseases of the gut. There are a couple of US suppliers of camel milk (google camel milk suppliers) or it can sometimes be found in fermented format (like a kefir) in Indian, Arab or Somali groceries.
I’m so grateful I found your site! I’ve been on Remicade for about a year and a half now for Crohn’s and Ankylosing Spondylitis. After my first 3-4 infusions, I started to notice some bumps on my scalp which I could pick at (but tried not to) and at first thought maybe it was some weird build-up of dandruff. Later, I noticed some little red bumps on my right hand and they started to get itchy. I couldn’t help but pick at them and when I would break any open, a clear fluid (water?) would come out. This spread to my other hand and then eventually my legs and the bottom of my right foot. My foot right now is by far the worst, and I can literally peel flakes of skin off of it everyday. It’s itchy and hurts and sometimes feels like I burned it. I have a patch of this on the inside of each leg between my knees and foot, another patch on my right knee, and the newest problem appears to be a patch starting on my stomach near where my belly button would be (they destroyed it during my resection so I don’t really have one anymore!).
The Remicade clinic I go to has never seen anything like this (I’m in northern Ontario, Canada) and my doctor doesn’t seem to believe that Remicade is the cause. He did put me on Methotrexate when I first started complaining about my scalp and hands and said that would help but it hasn’t, it’s only got worse. My foot is now so bad it hurts to walk or even to put a shoe on. I was supposed to have my next infusion yesterday but I cancelled it by lying and saying I had caught a cold and that we would need to postpone it. I’m afraid to quit Remicade as I’ve definitely realized benefits from it (especially for my AS) but these skin problems are getting out of control and I never had a problem with my skin before at all. I want it to go away and I honestly think if I was forced to a decision between Remicade (or Humira, Enbrel, et al) and these skin problems, I’d forego Remicade to have clear skin again. Please don’t suggest different creams either as I’ve tried so many different prescription and non-prescription and nothing works, or even helps really.
It’s going to take me awhile to go through all your comments but I’m curious if you can answer one thing for me. From the people you’re hearing from that suffer this same fate, does the skin clear up if you quit Remicade? Completely? Eventually? I sure hope so. I feel sorry for employees at stores, coffee shops, etc. who I have to exchange money with because I don’t blame them for their reactions when they see my hands….I’d do the same if I were in their shoes!
I’ve taken pictures but won’t send them unless you really wanted as it’s pretty gross. It looks very much like your pictures only worse.
Thanks so much for your site as it does give me hope. Until I found it, I thought this was maybe a new health problem in life I have to deal with but now I can hope it’s just from Remicade and that if I quit it completely, this will clear up….hopefully! :-)
-Pat
My husband only had 3 doses of remicade and started to get the symptoms you are speaking about. he had to stop remicade due to building antibodies to it and the symptoms went away (additionally a lot of bone/joint pains) within a couple months, but again he had only had 3 infusions. He also had a bad reaction to prednisone so when they suggested humira we decided against it and are trying natural methods – diet modification (eliminating dairy, gluten, processed foods, red meat(, ayurvedic herbs, yoga and miminizing stress. He hasn’t been on anything since the last infusion in November and everything is going well so far. He was very severe – throughout his entire colon and in the hospital for 2 weeks with doctors recommending complete colon removal. He lost 50 pounds in 6 weeks and went from healthy to hospitalized in about 3 weeks. They still don’t know if it’s crohns or UC – said only way to really determine would be to remove his colon and send to lab – not a great suggestion to us. He has put 40 of his 50 pounds on and seems back to normal. He never was going to the bathroom more than a couple times a day at his severest and is back to once a day. Doctors keep wanting him to start humira or 6mp, but our faith in medicine is very low due to all the problems he had with other prescribed drugs for this so are focusing everything on natural methods.
Hi Pat,
They’re finding some risks of patients developing induced psoriasis (I believe Adam also has some posts on here about it, but it’s starting to pop up in dermatological journals). Take a look at those pictures online and see if it looks like what you’re developing. It can develop red bumps primarily on your scalp and feet and outside of joints. From what I’ve heard, it eventually goes away after you stop.Also, go check in with a dermatologist and take the pictures with you.
Also, make your doctor do an antibody test for remicade (it you’re body builds antibodies to it, and its trying to attack it it can produce hives (red bumps, clear fluid)). OTC steroid creams won’t really help those type of hives.
I’ve been on remicade 9 years and have only 1 bought of skin problems. About 3 years ago I started I developed a rash, that progressed to the point that it physically looked like I burned my skin and I actually caught a staph infection. After I saw my dermatologist and after an incredibly high dose steroid cream which cleared it up we noticed that those locations I was developing hives in those spots (and had been scratching so much I started damaging my skin…oops). They double checked me for remicade antibodies, didn’t have any. So I made personally changes to everything that came in contact with my skins. I cut out any products with SLS, petroleum, and parabens (all natural products only). And everything cleared up…go figure. Apparently, by body finally reject those chemicals, it just took it awhile.
Skin problems can come from a wide variety of factors and you should check them all out, but just like diet don’t rule out more simple changes too (like your shampoos and soaps). Remicade can and does affect your skin’s sensitivity (the reason why we have to be careful in the sun). If remicade is helping your AK, give the product switches a try and at the same time go see a dermatologist. Last things, using any type of cream that has steroids in them (even OTC like hydrocortisone, etc.) for long periods of time is actually damaging to skin, it weakens it and can actually cause more problems. Do be careful with them! I hope this helps! :)
Hi Angela,
Thanks for your reply! I’m sorry it’s taken me so long to reply back to you but I only just discovered your post when I came here today (about a year and a half later!) to give an update!
I believe you could be right about induced psoriasis. I can’t get any of the tests done you suggest because my doctor does not believe Remicade is causing any of my skin issues and when he looked into it he could not find anyone else reporting such side effects either. This is why I found Adam’s site so comforting, and reassuring!
I actually think that perhaps some of us who experience these side effects may have underlying issues and when we take Remicade, Humira, Enbrel, etc. it weakens our immune system enough that these previously dormant problems are now free to run amok. I have no doubt our immune systems are weakened because during the time I was on Remicade I became so susceptible that it felt like every time someone even sneezed near me I’d end up with a bad, lingering cold that lasted a long time shortly afterwards! Before Remicade, I seldom ever got sick….while on it I’d venture to guess that maybe 50% of my time I seemed to have a cold or something else! I was never quite sure whether it was the same ‘bug’ that had symptoms that came and went or if it was something new….all I know is whenever I got sick it sure seemed to take a long time to feel better.
I also think the fact that people like Adam and myself, along with some other posters who mention this too, take so long to clear up our skin issues (and I mean *mostly* clear up….because even now 18 months later I’m still not 100% clear) after we quit taking these meds is because it takes a long time for our immune systems to first bounce back to our normals and then to beat back whatever the original underlying problem was that went rampant while our immune system was weak.
Of course this is all just speculation on my part and anyone reading my post, please don’t assume this is the problem for you too even if you have the same exact symptoms!
Angela, your post was helpful (even tho I read it much later than you intended!) and I really appreciate your reply. Thanks again :-)
-Pat
I had the EXACT same skin disorder appear after starting Enbrel in 2008. I stopped Enbrel, the “rash” disappeared, started Humira & it came back……stopped Humira, started Remicade & yes, back again. I tried all 3 drugs to treat Psoriatic Arthritis & the side effects were debilitating, I was unable to continue on any of them. A dermatologist diagnosed the skin rash as pustular psoriasis of the palms & soles (the only places I had it, on my palms & my feet were so bad there were days I couldn’t walk without first soaking them in water). I haven’t taken any of these wonder drugs for over 3 years & am still experiencing problems with cracking, itching etc. on my palms & soles. I reported the side effect to all 3 companies, all 3 said (at that time) they had never heard of that as a side-effect.
I’ve been taking Humira about 9 months and my hands and feet are swelling up and having a hard time walking up and down stairs because I am so stiff. Did the joint soreness go away after you quit taking the Humira? I’m calling my gut guy tomorrow!
Hi Kathy,
I’m super sorry to hear your having such a tuff time.
For me, much of my “strange” symptoms/side effects relieved themselves over time after stopping Humira. I still did get joint pains from time to time afterwards, but never as severe as when I was taking Humira.
I took Humira for a skin disease that I was having a cyst cut out every two weeks for a long time, I couldn’t take it any more, my Derm. said I should try it that it would probably help. I took the first shots and the second. I was sick as I could be. They made me stop for a month. I started again a month later. I took Humira for a total of six months. It never helped my skin disease and I felt sick all the time. Flu like symptoms aches and pains. The third week I had stopped my legs started having itchy places my finger nails all rotted off and my lower legs looked to be the worse case of psoriasis a person could have. It spread up to my waste. I was seeing doctor after doctor, take this it will be gone, it never happened. Test after test it was not psoriasis, but looked just like it. One test had shown the my RA factors were out the roof and two months later my hands locked up on me and my joints were just being damaged every time I exerted my self. Tingling in my arms and legs, pain all over it has been terrible, now my right hand is not usable and my left is catching up. I couldn’t work and have be put on perm. disability. I’m in pain every day from this and now have Lupus. I know this is all caused by Humira. They need to pay and help me with all my doctor bills and pain and suffering. I guess next I’ll have lymphoma and or Crohn’s or go blind. I know others that have suffered the same kind of things and Abbot needs to pay. Please help for what you have caused.
man I see all the comments made I thought I was mess up been on humira for 10 years are more no side affects with 2 other drugs I take with the humira.I have been diagnose with RA/sjogrens syndrome/ and 2 months ago IBS I live in Louisiana so my whole diet. Idon;t know if I;m going to make it without my [CRAWFISH AND BEER [SMILE] WELL I wish you the best and hope you can get some relief from your illness and keep your head up and let mother nature take her course THEY CALL ME SPACEGHOST DISABLE VET [ARMY] GOOD LUCK AND MY GOD BLESS YOU ALL MISTAKE I MADE IS IN YOUR HANDS.
For anybody following this post who has taken humira for your UC, please go to the humira review page that I just created here on the site, and fill out a review:
https://ihaveuc.com/humira-reviews/
Thx so much,
Adam
Adam,
I’m so glad I found your website. I’m on remicade, been on it since 2007. When I read your experience I started crying, because I feel like it could be me writing it. I’ve had scalp problems and psoriasis on my feet and my toenails. Mostly, it’s cosmetic. I don’t think mine is as bad as yours. But I’ve also been dealing with skin infections as well. I don’t know what to do. The remicade has made my UC 100% better, but I’m sick of dealing with all the side effects. I see my derm today. I hope I can speak clearly with her about my concerns. Sometimes, like others here, I feel like my doctors just blow me off. I’m fed up.
What up Zerlinna,
Super glad you found the site, and thanks for commenting!!
I totally know how you feel, and keep your head up (seems like you do that naturally:)
Keep us posted on what your derm doc has to say, and I wish you the very very best,
Adam
(I love your name too:)) You are for sure the first Zerlinna who’s commented on this site:))
Adam…I read where you experienced the joint pain on Humira. I have been on Humira for UC several months now and have gotten severe sternal/chest and back pain and tenderness. It hurts to breathe, move, touch, etc. Is this similar to what you were experiencing?
Hi Melissa,
Unfortunately, it sounds very similar and I’m super sorry to hear you in the middle of this, as I for sure remember how incredibly painful it can be. But, good news is it won’t last forever. things can and will get better. I’ve been off Humira for several years now, and I’ve never expereinced the pain that I remember from back then.
-Adam
Am looking for info as taken off infliximab and started humira. Great site.
Hi Adam, my name is Todd. I am a 53-year-old white male.
I was taking Humira for approximately one-year to treat Crohn’s Disease, however I have discontinued its use due to health complications. The damaging conditions and complications I am now suffering are not in my family (they are not genetic), nor have I ever suffered any related symptoms or conditions before taking Humira.
Approximately 3-4 months after beginning Humira, and not knowing that any of these conditions were possibly related or promulgated by Humira, I developed a small lump near the ball and heal of my right foot. In addition, I have numbness in my big toes and sharp, electrical-like shooting pains up both legs starting in my heals and ankles. Again, it was unknown as to what or why I had a suspicious area of inflammation or numbness. The bottom of my feet and my the lower palm of usually my right hand itch tremendously and look red as if it were a rash.
I then developed and was treated for several skin/dermatology conditions, such as “inflamed seborrheic Keratosis” and various “basal cell carcinomas.” The Dermatopathology Report is quoted as saying, “This is a curious case and there appears to be a disconnect between the clinical and histopathologic impression. Certainly, there is no evidence of any atypical basaloid or atypical invasive squamous process, even despite performance of multiple step levels.” Techy talk aside, it didn’t make sense to the doctors.
Soon after, I was diagnosed with “Gynecomastia,” but only in my right breast. Again, the diagnosis was confusing to the doctors as I had no family history and that it was only in one breast.
In this year alone, I have suffered from nearly a dozen painful, and apparently unrelated and mysterious, inflammations and “lymphedemas.” I have had to go to the emergency room 3 times and to many doctors. Multiple painful swellings have occurred in my testicles, penis, under my buttocks, arms, hands, face, lips, throat, and tongue. I continue to suffer from the disfigurement of my right breast/chest area due to the uncomfortable swelling from the onset of Gynecomastia and painful swelling and numbness in my feet and toes.
I am now under the care of an Oncologist/Hematologist who, and again, is confused as to why this is occurring and believes it is a severe reaction to Humira. The Oncologist is trying to rule out cancers, as my symptoms appear to be similar to Hodgkin’s. At the time, besides vitamins, I take NO other medication, not even Advil or Tylenol, except for a prescribed Steroid to reduce my painful swelling.
Has anyone else suffered from mysterious inflammations?
Hi Todd,
I’m terribly sorry to hear about all you are going through. As you can see, there’s quite a few comments on this particular post, and many folks like you and me have had some strange things take place after initiating Humira. But, I can’t say that I personally can recall someone mentioning the exacts you briefed above(and thank you for all the details since its often hard to describe some of this stuff).
But, that said, Ii for sure can’t say that others (and quite possibly many) have not had similar mysterious inflammations as well.
What I’d do if you haven’t already, is search on PubMed under humira or its scientific name. There is a decent chance that you’ll come up with some studies which include pictures, and that may give you a heads up on some other strange inflammations that are going on with it. I myself had great luck doing that. The best part is that in general, the scientists/doctors who are listed as the authors of those studies usually include their emails (or you can google their names and often find it) AND these people are usually very receptive to emails from people like you and me. And, if you can send them pictures, they might be able to give you some ideas if whatever you’re dealing with is something they’ve seen (or have studies on a broader level).
It takes some time and effort, but that’s what I do to help come to some conclusions as it appears the current docs you’re working with might not have the exposure to these “rareish” type of things post biologic use.
best of luck to you, keep your head up, and I wish you the best,
-Adam
Thanks for the PubMed link. It’s pretty techy medspeak, but I’ll try to digest some of it. You’re doing a really great thing here! Cheers.
Hi I was reading your site and it basically scare the hell out of me. I have had Chron’s for over 40 years, my daughter who is now 25 with a 21 month old son has had Chron’s for the last 5 years. Her Chron’s is different than mine and they they have now recommended for her to start either the Remicade or the Humira, which one is the lesser of evils?……..is there anything else out there with less side affects? She was on imuran and it bottomed her out. Right now she is taking pedisone but we know that this is not a permanent solution. I am just beside myself with the side effects that I have been reading on here. I know there is a new drug being tested but so far not available in Canada. How does someone get on a list for the trial run on the new drug. Is there any good results for people who take the humira because all I see is bad reactions.
Hi Denise,
I’m not sure about how one would get on that particular list you mentioned. Best would be to consult with your doctor to see if he/she has any ideas. As for positive results from Humira and Remicade…yes indeed there are many people who have had positive results from one/both of those medications. Myself and others who have had bad results are simply some of the people. You can read the remicade reviews here:
https://ihaveuc.com/remicade-reviews/
I briefly read through your earliest posts. I was on Humira for my RA for one year in the year 2008 to 2009. Right away I developed a rash on the back of my neck, on my head and my toes. My doc then prescribed Arava to control the itch. I took this for about a month and stopped this on my own because it was making my hair fall out. I switched doctors near the end of 2009 because we did not see eye to eye. When I saw my new doc she took me off Humira. This is now October 2013 and I am still dealing with the rash on one foot. Plus I have been treating a fungal infection on most of my toes. This rash never healed from the side effects of this deadly drug. I am writing you to give you some advice. I have been off all man made drugs since the summer of 2010. I took a Genova Diagnostics antibody blood analysis test that evaluated certain foods that I am sensitive to. Plus I take some wonderful Chinese Supplements that have made a complete turn around towards the healing of my body. If you are interested in reading about Dr. Chi’s Chinese Supplements go to the website; http://www.lifeproducts.com. You can read all about Dr. Chi and the many supplements that he provides to help people who are suffering from all kinds of diseases. I have been on other man made drugs prior to Humira and all of them affected me in a negative way. I am now a vegetarian and am healthy. I encourage you to give this a try. Man made drugs kill and destroy our tender bodies. Eating organic food and taking natural supplements is the best and only way to fight ill health of the body.
Thanks for the tips Becky! If you’re able to share, what particular foods are you sensitive to according to the test you mentioned?
how does humira react when taking shots of cordisone for hip replacement?
That’s a tuff one Robin. I did a search on PubMed just now and could not find any related studies, but my hunch would be that reactions to humira are so specific to each person, that even with some high numbers and data on the combination you mentioned, the potential reactions are pretty hard to judge. You should ask your doctor to see if he/she has any input if you’re concerned.
Hi, I’ve been reading these comments and thought I’d post my son’s story. (well, the part that pertains to skin issues) My son is 16 and was diagnosed with Crohn’s Disease when he was in the 4th grade. He is allergic to sulfa drugs so the Pentassa and Asacol and other 5asa didn’t work for him, and he reacted to Imuran poorly, so we found ourselves using biologics. Remicade first, and then Humira. He’s been taking it for about 4 years with mostly good results. He has terrible insomnia, which I noticed is now listed as a side effect, and also some joint pain and muscle aches, but he’s able to be active and so it’s hard to know if the pain is due to the Humira or his activity level. (he plays football, basketball, and runs track, so he trains year-round pretty vigorously.) He started having a rash like you described about 2 years ago. Large-ish plaques on his shins and sides of feet mostly, and a few on his calves. We saw a dermatologist 6 months ago, who did a biopsy and came back with a dx of lichen planus, which is (surprise!) thought to be an autoimmune disease. Supposedly not dangerous, and with normal people, usually resolves on it’s own in under 2 years. It can be treated with topical steroid creams or a topical immune suppressant type ointment, just to help with the symptoms. Since my son is taking Humira, I suspect his will not follow normal behavior. Has anyone else gotten this diagnosis? Our GI is acting like it has nothing to do with Crohn’s or Humira, but he also acts like the insomnia is unrelated, which I now know to be incorrect.
Hi Stacey,
I myself have not heard of this diagnosis ever on iHaveUC. You may want to read this link:
https://ihaveuc.com/psoriasis-and-eczema-following-remicade-or-humira-use-for-ibd-patients/
A doctor in Europe has conducted a pretty interesting study which I link to there. May give you some more ideas on what’s happening with the skin. Either way, I’d suggest you print out the study and bring it in to your son’s doctor to read so he can learn more about this as well.
Best, Adam
I have crohnes. After nearly 10 years in and out of hospitals for blood transfusions and and on 80 mg prednisone that no longer could help me ( am only 102 lbs) I was put on remicade. I developed medically induced lupus and could barely walk or hold my new born. Then I was put on humira. It was the miracle drug. I finally felt normal. Then I noticed any illness that came around me I caught. I battled strep throat for 8 weeks this past summer and broke out in a horrible rash that took months and months to get rid of. It looked similar to one of your pictures. They told me it was guttate psoriasis. I believe that being on humira caused me to struggle w/ getting better. I am desperate to get off humira, but so fearful of ending up back in the hospital. I have been on Humira for almost 6 years now .
Why I didn’t look for a website such as this before is utterly shocking to me now that I’ve seen your story!!!!!
I just got off, so to speak, Humira after three years; the most of which time I spent in bed, because my ARMS AND LEGS FELT JUST AS YOU DESCRIBED yours as having felt after only two weeks of starting Humira to a T!
Having noticed this commonality, I read on – only to find that you and I shared a great deal of similar side effects during our respective times on Humira (or as I called it, Poison)!
Just knowing now that I am not alone in this recovery is the most refreshing feeling, and I can’t thank you enough for starting this site. I’ll be on it regularly and will submit my story on your page regarding same.
I look forward to reading more about and from you!
Best,
Dawn Hagen
Las Cruces, NM
hagendawn @ymail.com
Hey Dawn,
I hope all goes well for you in the future post Humira. Keep us posted and thanks so much for joining the site.
Best,
Adam
I have Crohns. I consider my case mild, but it’s more that I’m asymptomatic unless I’m in a flair, then it is severe. So I’m treated as severe. I was on Remicade for a little over a year. It worked well until it just didn’t (I had scar tissue that had to come out, which was causing me the worst problems). I had zero side effects from it except that I have bad veins and getting an IV in me was becoming a nightmare.
I was on Enticort for a good year and a half when my doctor said he didn’t think it was doing enough for me (maintaining). So he put me on Humira. Honestly, I try to be a big girl about all the crap I’ve been through. I’ve suffered a lot of pain and try to just roll with it. But I think those #$@!! epi pen shots hurt like hell!! Every time I get ready to do it, I think ‘it won’t hurt so bad.’ I do it in my thigh cause I just can’t get myself to do it in the stomach. Every time, it hurts and buns like a really bad sting. I end up gritting my teeth and cussing my way through it. It even burns after I remove the epi pen. Does any one else have this issue???
Also, I have been on Humira since the beginning of the year (2014) and wasn’t noticing any issues at all. But yesterday I developed this itchy, dry, patchy rash on various places on my body. It’s odd. A couple little spots on my face, on my neck and my eyes feel itchy. Generally I feel itchy. I don’t know if this is something else or the Humira. I’ve had this itchy rash before a few weeks ago. I used topical cortizone cream and it went away. Thoughts?? Thanks!
Hi, I just read your post and thought you’d like to hear about my son’s experiences. He has been on Humira for several years and so far, so good. He tried the shots in both his thigh and his stomach, and he says the stomach is much less painful. It’s not a long needle, basically he pinches a bit of skin (he’s relatively thin so there’s not much fat, but if there were some more fat, I imagine it would be all the better,) and then hits the plunger. It’s no party, but on his thigh, he has no fat, so he felt like the needle was going into muscle, which hurt. I think some of the stinging is from the medication being thick. I know from our pediatrician that thicker immunizations (such as MMR shot) hurt more because they are a thicker serum than something like an influenza shot.) As to your rash, my son developed some red itchy patches, mostly on his lower legs, but a few on his trunk, and for a while he had a full blown rash from his neck down, and some patches on his face. In his case it turned out he had an allergy to acne medication (benzoyle peroxide in Clearacil) that was causing the rash on his face, and he had developed a skin condition on his body that the dermatologist confirmed thru biopsy to be something called Lichen Planus. It’s an auto immune disease and he thinks that either people who already have an auto immune disease are prone to it, or perhaps the immune suppressing character of the meds you take for Crones make you more succeptible. My son was prescribed a cream that helps with the itching and also helps fade the spots. The cream is called flucocinonide. It’s a topical glucocorticoid steroid. I’m not sure if this is what you have, but it might be worth a trip to the derm doc, because it’s treatable if it is the same.
I have had quite a few side effects from Humira. Skin issues were diagnosed as numula eczema. Also had staph infection. Asteroids went crazy and at 56 years old I had to have them removed. The thing that helped my eczema was diagnosed special tanning bed with UVB. They had it available a local physical therapy center. When I start having minor issues I go to a commercial ttanning bed and it helps. At one time the eczema circles were about 4 inches in diameter. I was diagnosed with these side effects at University of Iowa hospital and consulted with 6 departments to come to conclusions.
Hate spellcheck. Adenoids went crazy. Numular-eczema. Also, a friend on Humira recommends ICE previous to injection. Anyway Iowa City said some of thw Humira side effects are known but rare.
This may be a far stretch, and it may have already been discussed in previous comments, but there may be a link between psoriasis (or possibly other skin ailments) and UC. I personally had bad psoriasis as a kid and then fast forward I was diagnosed at 20 with UC as well. My doc has discussed the relationship between the two and how some medications are used to treat both. I think in the end it all boils down to a faulting immune system. Whether it is on hyper drive like those of us with UC where we are somewhat attacking ourselves and the ulcers/frequent trips to the bathroom are just the manifested side effects of this, or not, I think it all stems from the same place – a malfunctioning immune system. Is this just crazy talk? Does anyone agree or disagree? The skin reactions experienced in this story just brought this connection to mind. I hope I didnt stray too far…
oh and I particularly love how you mention the bond formed between patient and staff at the gastro office. I literally went in yesterday to drop off a paper and felt like I was visiting with old friends even though they are all ladies much older than me. It was great!
Glad to hear that another UC victim is doing better. Too bad you had to go through all that mess to reach your light at the end of the tunnel. But hey, like you said, what doesn’t kill you makes you stronger? Right superman….? =)
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I have had Crohns for 30 years now. I was on Asacol/Desicol for the past 25 years and it helped to keep the Crohns from progressing up until about three years ago. A colonoscopy confirmed that my Crohns had progressed to a severe stage. Luckily for me I have never had too many symptoms, the occasional IBS, but nothing Lomotil wasn’t able to keep under control. However, this past April I experienced my first full blown Crohns episode that put me in the hospital for two days. The doctor said I was at the point of no return and ordered Humira shots to begin as soon as possible. I took the first four shots a week after my hospital stay and they hurt like hell, stinging for hours afterwards and still feeling sore for up to two days later. Add to that, feeling ‘sick’ for 48 hours afterwards. Two weeks later I took the second round, two shots, and had the same results with one added symptom, a sinus irritation. The sinus cleared up after 24 hours so I didn’t give it another thought. Two weeks later I took the third round, one shot, suffered through more burning at the the shot site as well as feeling sick for 48 hours, but this time the sinus problem progressed to a full fledged infection. I decided to hold off on the next round of Humira two weeks later, until I could get the sinus infection cleared up. In the meantime, I had another colonscopy which proved to my doctor that the Humira was working as my Crohns sores were healing and clearing up. So he ordered me back on it as soon as my sinus infection was gone. Move ahead four weeks without the shot and I was ready to start it again. I took the shot last Friday, terrible burning at the shot site, sick for 48 hours, with yet another new symptom. I developed an itchy pus filled bump on my left eyelid as well as a HUGE lump on the left side of my tongue. I haven’t been able to eat very well the past two days because the lump on my tongue is very tender. I will be calling my doctor tomorrow a.m. to report this new development. After reading all of the above comments, I am very concerned about continuing Humira. But like a lot of you, I don’t know what to take instead for my severe Crohns condition. When I shared with my doctor the pain at the shot site as well as the feeling ill for 48 hours, he suggested that we try another drug, similar to Humira, something that started with an ‘S’. So his office is checking this out against my insurance and will be in contact with me about switching to it. He said it didn’t have the same problems with the pain at the shot site and worked the same as the Humira. Once I find out the name of this drug, I will share it here with any of you that might be interested in knowing about it. Sorry I can’t remember the name of it right now. Thank you for sharing your stories – I appreciate knowing how Humira is affecting all of you.
Hi,
Acne like bumps? Yep. I have those horribly all over my face (it’s like deep cystic acne that itches like crazy but hurts like Hell when you touch them). These same great bumps are on my head also. I spoke to my doctor about the ones on my face (the ones on my head have recently began) and he wasn’t familiar much with this reaction either. Kind of glad to know I’m not alone on that one.
Joint pain I also have, however, yours sounds a lot worse than mine. I find my hips hurt badly where they make contact with the bed. I also am very stiff after sitting in certain positions for more than a few minutes. It hasn’t gotten bad enough that I’ve asked to be pulled off of Humira. The joint pain isn’t. The pimple/cysts…well, they’re making me consider it.
My newest symptom is a few itchy bumps similar to the acne thing in my unmentionable area if you know what I mean. These things are killing me because I want to scratch all my skin off.
I’ve been on Humira for almost two months for Crohn’s disease.
Are you taking any medication now? I’m a little scared to just quit the Humira so soon because the pain I was in prior due to Crohn’s has actually subsided. I’m also afraid that if I switch that I might have similar if not worse reactions on a different medication. Ugh…
Thanks so much for sharing your story.
Hi Lindsay,
I don’t take medication and have been off humira for over 5 years now. Definitely don’t feel alone with these strange side effects, and as time moves forward, I’m sure your doctor and the rest of the medical community and patients using this will be more familiar with potential side effects. I hope you can get on a nice track with this clearing up soon,
-Adam
Hi, I’m Renee, first I would like to say that I do not have UC, my auto immune disorder is still a mystery, but have been dealing with it for about 20 yrs. First my eye’s and then last yr I bumped my shin and developed (PG) Pyoderma Gangrenosum which is commonly associated with UC and Chrones. I was put on steroids, cyclosporin and Remicade… The treatment healed my wound relativly fast once starting the treatment, (5 months) I am still on remicade and have developed those big pimple things on my head from time to time, but mostly on the palms of my hand, in my ear canals and around my ear. Also my groin and now developing under my breasts and starting a few blisters in the other palm of my hand.. Also had one in my nose.. They ooz and get crusty. I have a very good derm. but all this started before my last treatment and they said it was contact dermatitis. Thanks for your pic’s because now I have some thing to show them!
Hi Renee,
I’m super sorry to hear your dealing with skin related issues which are sounding all to similar to what others have mentioned. But, best of luck to you with resolving this in the near future, and please keep us posted.
Hi all,
I receive emails when anyone replies here because I posted here a long, long time ago. I’m to lazy to look up my original post and can’t remember exactly what I posted but I do remember I was having horrible, horrible skin problems mostly on my hands and feet but also on my legs quite a bit and a little on my scalp too. This all started after I began Remicade. At it’s worst I could literally peel long flakes of skin off of my feet every single day and same with some spots on my legs. My hands constantly had little bumps that when pressed would ooze clear fluid and I could peel skin from my hands too. It was incredibly horrible.
Against my doctors wishes I quit Remicade. Remicade did seem like a miracle drug for me at first but the side effects are not worth it. I have not found a replacement nor even tried and instead I’m just dealing with my Crohn’s and Ankylosing Spomdylitis, using pain meds when necessary, and trying hard to maintain a better diet.
I’d say it’s been about a year and a half or so since my last infusion of Remicade. I’m incredibly happy to say my hands are 99% cleared up and my feet are about 90% better. I have some red spots on my legs but they are mostly faded and I almost wonder if that’s more scarring from before. The main thing is that I’m not ashamed to wear shorts or walk barefoot anymore and I don’t have to witness cashiers awkwardly try to hand me change back after they see my hands (the way they were when they were at their worst)!
I wish I didn’t have these side effects and I don’t think my doctors even believed Remicade was causing it….but from what I read here and elsewhere, along with the photos Adam posted which resembled my skin problems (except I’d say mine were even worse) and now the fact that my skin has almost entirely cleared up even though it took about a year from the last infusion….I have no doubt now that Remicade does adversely affect some people. For those who don’t have these side effects, good for you and I hope it never starts….but for those who do….I don’t know what to tell you. The benefits of Remicade were very apparent to me but not worth the skin problems I developed at all….so I guess it’s a judgement call whether to continue with the treatments or not for each of the unlucky ones like Adam, me, and anyone else who suffers from it.
I know Adams post really helped me a lot when I first found it and I hope my follow up post here can help someone in return. Good luck to all
Pat,
thx so much for the update, and super happy to hear you’ve had things almost completely resolve:) awesome news and best to you!!
Thank you Adam! For your words but also for having this site in the first place and for maintaining it for as long as you have!
I wrote about having toe fungus which is a side effect from taking Humira for 10 months back in 2010. I am still dealing with this. I am sending information on how I control my RA without taking any prescription drugs.
i FOLLOW a vegan diet and do not take any prescription drugs. Go to CHI ENTERPRISES, INC. on the internet. I have been taking Dr. Chi’s herbal supplements since 2010. These are wonderful natural healing remedies. I take AUTOCIN AND Myosteo for my RA. They take care of my pain and also help in fighting further damage to my bones. You can go off the medications such as Humira and heal.
You can be your own advocate. My diet also prevents my having pain and inflammation. Both a good nutritional diet and natural supplements take part in my healing. {Dr. Chi has a book you can purchase that describes each of his supplements and records of case studies of each.}
MY diet is strict; no night shade veggies, I can eat all the other veggies, fruit, nuts, seeds, quinoa. decaffeinated green tea, and other herbal teas.
I do not eat dairy, animal products, sugar or sugar substitutes. ALSO NO PROCESSED FOODS – JUNK FOOD
Also no caffeine drinks or soy foods.
I also use organic extra virgin olive oil in place of butter. This is also very good for you.
I STEAM MY VEGGIES TO GET THE BEST POSSIBLE NUTRIENTS OUT OF THEM. After the water cools you can drink the liquid if you wish.
Fruits and vegetables pack a lot of vitamins, minerals and energy. Plus nuts and seeds also play their part.
DO NOT EAT REFINED TABLE SALT. This is like poison to the body. Instead use Real SEA salt or Celtic Sea salt. Both of these are very good for you.
This is a strict diet and it has proven itself over time that it works for me.
I hope this helps.
Hello. I dont havre uc but I was diagnosed with crohns last year im only 20 now. I had tried the steriods but that was a disaster! About 3 months in I got this small red dot.. then another on my arm.. more came. They had disappeared exept one.. that has been there for almost a year. I went to my gastro and he said it had nothing to do with hurima.. you have validated my concern (and also validated my gastro is an idiot!) But I want to thank you for sharing this. I have made an appointment with my gastro and have decided to stop taking it. I have also had the intense muscle ach. But as you said pond it off as I must have slept wrong. And recently my knee have been giving me me very bad problems even giving out on me… anyway I just wanted to say thank you for sharing your story.
hi
i recently started on humira (about 4 weeks ago?) after building antibodies to remicade.
the only side effect i have noticed is my back and neck have started to get little pimples, that have the hard white little sebum things that can be squeezed out.
and i tweaked my back the other day and it has been sore for almost a week now. wasnt sure if that was a side effect. i did notice my joints got ultra painful when the remicade would start to wear off.
but what really made me comment was your ankle rash photo.
i have had a similar rash on my hip for over a decade, and have noticed it flares up more when my crohns flares up.
remicade pretty much made the rash disappear, and it has started to slightly come back since humira, but is much milder than it was when i was on no drugs.
Thank God I found this site.I was prescribed Humira a few weeks ago but have never started them due to being unwell.
I had about 3 years ago been on Methrotexorate for several months and stopped taking them due to recurring side effects which I recovered from quite rapidly once I stopped.
Having these problems quite fresh in my mind I resisted humira until my last hospital appointment and was to go ahead in mid December as stated I was unwell and it was put off till today which I am glad to say has not taken place mainly because of my own reluctance to start.
I honestly feel so sorry for the suffering of those who have taken it many who seem to be still suffering months after coming off this drug and also feel that the long term effects are not fully known or understood.
What I could never understand is why the hospital was always so keen to put me on humira when I was taking pain killers and anti inflamitery tablets which I was having no side effects at all and although not perfect did let me lead a reasonable life, maybe it is that a longer term of trial is needed and we are the guinea pigs to achieve this.
Today I have made that decision I am not taking it after all it is my own decision.
About 7 years ago a doctor told me I would be in a wheelchair within 2 to 3 years that has never happened and I can acknowledge my condition has no doubt got somewhat worse but I am also 7 years older so if you take that into account also maybe things are not as bad as they seem after all a 60 year old is not going to be up to the same activities as someone younger there are always exceptions to the rule but reading through many of the letters 95% appear to be reporting problems and very few singing from the rooftops if we do not know fully the results over a longer period of time that 95% could easily increase.
Hello Kevin,
I wish you the very best of health and happiness. I’m so glad that you did not follow your doctor’s to start this medication. I do not have IBS, however, I have long learned that you should take your doctor’s advice with a grain of sand. You will remain healthier if you can avoid any and all medications.
I know this because by following my doctor’s advice to take hypertensive. When she wanted to recommend a second hypertensive, and told me that I would lose potassium, I pushed back and said no thank you. She was quite upset that I did. In my mind’s eye I saw myself losing a lot of the supplements that I took at the time. So I refused,.
Going back to the first hypertebsive drug I was taking….at the beginning my fasting blood sugar was 91, in seven months it rose to 393. My average was 503. I had extreme thirst, frequent urination, blurred vision.
I was given diabetic medication along with another hypertensive. I then suffered additional side effects: muscle/joint pain, hair loss, rapid heart beat, unable to sit in one p;osition without pain for over 30 minutes, harder time sleeping, something wrong in my back/right hand side, rhemotoid arthritis in my hands, etc. etc. I later kept forgetting to take the hypertensive and my blood sugar average fell hundreds of points. I stopped even the diabetic medications and it fell further.
Later, the side effects disappeared, the arthritis was a different story. I had to employ some additional natural means to get rid of it…took approx, 2 years to almost fully recover from it. Humira is also recommended for arthritis…I decided not to risk it after reading stories on this site.
I encourage you to look for natural means to heal your gut, i.e. probiotics, liver/gallbladder flushes, green drinks (organic only), L-Glutamine (sp?) an amino acid known to rebuild the intestional lining, tart cherry juice to lower inflamation (naturally), avoid antiinflamtory drugs -known to cause intestional damage, limit sugar…
CAUTION: Your doctor will get a very good laugh at this list; they are only provided with 3 hrs of nutritutional education and hundreds of hours on medicine. I employ you that you do your own research and find out what others say about these possible remedies. Something may work for you.
To your very best health may the Higher Powers guide you to greater and greater health. Karen
Hi Kevin,
I hope this new year brings you a wealth of happiness and health.
I know my diagnosis is different to yours but I can relate to the skin problems.
I was diagnosed with crohns in 2012 although I believe I had it a few years prior. I’d lost a lot of weight had a lot of pain etc had operations and a temporary bag which was successfully reversed 4 mths later. I was in remission on azathioprine as a maintenance drug until I contracted C.diff and glandular fever in August 2013. This thew me into a flare and once it had settled down I could no longer tolerate aza. I was put on infliximab and all was fine for a year until November 2014. For the last 2 months I’ve had horrible skin conditions and joint pain. I have the lumps on my scalp and I have the red scaly patches. I’m extremely worried that it’s psoraisis as an ex boyfriend had it and I would rather not live than have to live with psoraisis. I just wanted to let you know that you’re not alone, it’s nice to know I’m not alone with these horrible symptoms!
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Omygoodness!! I have been on Humira for …well 8 shots worth, and i have developed nodule like bumps all over my calves, ankles, and shins…and I have the pimple like bumps on my head….and overwhelmingly ezhausted.. Just want to sleep all the time…. No energey whatsoever…. I just have been so scared…. The doctor told me it is either from the medication, or it is erythema nodosa-…. But have never had it before… And my lower legs hurt… So bad … I am in shock to read this. I did not want to take this Medicine to begin with, but was so sick I felt pressured…. I have requested an appointment with the Mayo Clinic in Minnesota and should hear back this week… I would rather be without a colon than feel the way I feel…. Oh and one more thing… For going on 2 weeks. I have had the most horrible sore throat… But no fever…
Adam! So glad I came across your blog. I too am having the same skin issues and am currently on Humira. I saw the Dermatologist yesterday and hes trying to get a hold of my Rheumatologist to see what they can switch me to. When I saw your pictures it confirmed what the Dermatologist said. Its awful and scares me hearing yours took so long to clear up! Thank you for putting your story out there for others. Good to know i’m not alone!
HI Carla,
Definitely you’re not alone. This is starting to get reported more and more by folks like us who have had these types of adverse reactions (aka…side effects). Wishing you the best and thanks for writing in:)
Adam
I have the same thing which they are saying is psoriasis on my hands/feet/scalp/armpits/groin. All started within the first month of using the Humira and never had a single skin issue before. Also started getting folliculitis body wide which is itchy/painful/leaving scars when healing. The arthritis has gotten far worse and what little energy I was functioning on before is depleted. While I hate to see anyone else in this same situation, I’m comforted to know that I’m not alone and “it’s not all in my head”.
My doctor is trying to put me on Humira. I have pretty mild symptoms though. I did a lot of research about it and told him I wouldn’t do it. I have had the pharmacist, and nurses calling my house to try to persuade me. I now have to go in and sit down with him so he can try to talk me into it. Not gonna happen, I would have to be pretty desperate. In clinical trials it has only been shown to help 10 to 18 percent of people with UC. A month before it was approved for UC the FDA put out a statement saying they weren’t going to approve it. I am not sure what happened in that month. While searching for alternatives to Humira I found the SCD diet. I have been trying it for a few weeks now. The beginning is really hard. I am not sure if I am better or not, symptoms are just different, I guess I do feel better overall.
Hi from the Uk and thank you for your honest and educational website. I was getting desperate for answers with none from those in the know.
I have been blessed with Crohns since 2011. I started off initially on high dose steroids and then onto the chemo’s. after a few tumultuous years they started me in remicade which caused terrible skin manifestations. I was finally put on humira 4 months ago and yes as prescribed my crohns has receded. I have finally joined the ‘have enough time to sit and read’ on the toilet brigade after years of explosive moments that an Isis operative would give camels for.
As much as the crohns has been kept at bay, other, nasty aspects have raised there heads. I am with you on the joint pain, I feel like I’ve just celebrated my one thousandth birthday and along to celebrate are arthritis and dermatitis. My hands have blistered and cracked and my joints feel like ratchets. Strangely enough it feels as if every joint or bone I have ever damaged in the past has returned to haunt me. Being an ex rugby player there aren’t many that are not hurting right now.
Tiny pustules are all over my fingers, they have split and now resemble an aerial view of your Grand Canyon. Not good.
It’s so refreshing that you have this information on your page. I can’t thank you enough. I was beginning to feel freak like through all of this but now have hope in that I am not the only one. The worst part about the physicians is that they make you feel like the only person who is experiencing these issues and often tell you “well I’ve never seen or heard of that before.” I think it’s high time they started to correlate information from the patients on the internet as this is surely quite serious.
Thanks again for allowing me to not feel so alone in this fight.
Mike
Mike,
Super sorry to hear you are dealing with these side effects too, but keep the jokes a rolling, the isis operatives joke had me going for a longer time than usual…!!
totally agree about the knowledge gap concerning the side effects and too many docs not up to speed on them…maybe someday,
best,
Adam
Wow, I can’t believe all these posts. I was googling because I started getting blister like pimples or sores on my face, on and in my ears, in my nose, around my eyes. I have been on Humira for 4 months. I told my RA Doc and she has had me stop the Humira. It’s only been a couple weeks and the blister pimples are still there. They are always sore and as soon as they start to heal, they start up again. I also have irreversible ringing of the ears, however, this is from the generic drug Lipitor I was on for years. I have got to point that I really hate these man made drugs. The commercials are the worst and there’s your sign.
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