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 travelled 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 Chron’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.
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 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 storng 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!
Also, please take the site’s medication survey
And, here is another article on Humira and it’s drug information
April 14, 2010 at 7:40 pm
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!
April 14, 2010 at 8:02 pm
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
May 28, 2010 at 4:50 am
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 ..
May 28, 2010 at 7:42 am
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?
June 8, 2010 at 7:19 pm
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!
June 8, 2010 at 8:49 pm
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
June 9, 2010 at 4:01 pm
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.
June 9, 2010 at 5:59 pm
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
June 9, 2010 at 6:25 pm
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.
June 16, 2010 at 2:59 pm
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
June 16, 2010 at 4:02 pm
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
July 11, 2010 at 7:10 am
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
July 11, 2010 at 8:30 pm
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
July 13, 2010 at 8:42 am
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
July 12, 2010 at 4:56 pm
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!
July 12, 2010 at 5:03 pm
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
September 11, 2010 at 9:45 pm
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.
September 12, 2010 at 7:27 pm
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
September 30, 2010 at 7:11 pm
(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,
October 1, 2010 at 1:54 pm
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.
November 30, 2010 at 1:41 pm
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
November 30, 2010 at 10:41 pm
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
December 18, 2010 at 8:25 am
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
February 4, 2011 at 11:02 pm
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.
March 16, 2011 at 7:09 pm
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
March 16, 2011 at 9:00 pm
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: http://www.ihaveuc.com/psoriasis-and-eczema-following-remicade-or-humira-use-for-ibd-patients/
I wish you well and the same for your daughter!
-Adam
March 29, 2011 at 4:34 pm
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.
March 29, 2011 at 5:12 pm
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!:
http://www.ihaveuc.com/psoriasis-and-eczema-following-remicade-or-humira-use-for-ibd-patients/
April 6, 2011 at 7:55 pm
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.
April 6, 2011 at 9:14 pm
Hi Shawna,
I use the SCD diet, there is quite a bit of info about it on this site, and especially on this page: http://www.ihaveuc.com/the-diet
give it a look, it has helped me greatly with getting off the medications and having a pretty good lifestyle.
June 11, 2011 at 9:59 pm
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.
June 12, 2011 at 4:59 am
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
June 17, 2011 at 5:51 pm
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
July 26, 2011 at 11:32 pm
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***
August 9, 2011 at 12:31 pm
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
August 9, 2011 at 2:49 pm
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.
August 12, 2011 at 7:14 am
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
August 12, 2011 at 7:21 am
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
November 3, 2011 at 10:24 pm
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: http://www.ihaveuc.com/help-for-the-rash-and-itch-from-humira/
August 29, 2011 at 2:09 pm
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
August 29, 2011 at 10:46 pm
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
October 2, 2011 at 2:02 am
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.
October 2, 2011 at 7:42 am
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…
October 6, 2011 at 1:40 pm
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
October 6, 2011 at 6:29 pm
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
November 3, 2011 at 10:22 pm
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:
http://www.ihaveuc.com/help-for-the-rash-and-itch-from-humira/
October 23, 2011 at 2:09 pm
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
November 3, 2011 at 10:20 pm
Hey Sam,
I jsut got a story submitted from a guy named Drew. You should read his story: http://www.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.
November 11, 2011 at 3:25 pm
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
November 11, 2011 at 3:48 pm
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
November 12, 2011 at 11:41 am
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.
November 27, 2011 at 4:41 pm
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
December 5, 2011 at 7:24 pm
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
December 6, 2011 at 10:20 am
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
December 9, 2011 at 5:17 pm
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.
December 14, 2011 at 4:19 am
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?
December 16, 2011 at 1:39 pm
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.
December 16, 2011 at 6:35 pm
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
January 9, 2012 at 10:14 pm
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
January 10, 2012 at 11:47 am
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..
January 10, 2012 at 5:13 pm
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
January 10, 2012 at 9:12 pm
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
January 10, 2012 at 9:20 pm
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!
January 10, 2012 at 10:25 pm
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!
January 19, 2012 at 9:43 pm
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!
January 22, 2012 at 6:21 pm
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
January 25, 2012 at 2:06 pm
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
January 25, 2012 at 3:32 pm
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