With the recent approval of Humira (Adalimumab) by the FDA, there is a growing need for ulcerative colitis patient reviews of their experiences with this medication. Like some other biologics, Humira helps to stop the communication of a specific part of the immune system’s inflammatory response.
Many UC’ers are concerned that immune suppresants such as Humira will stop their immune system from working. That is not entirely true. Humira’s main goal is to stop the TNF alpha section of the immune response. (if humira stopped everything in our immune systems from working…it would be game over for everyone real quick)
Although Humira was approved by the FDA much later than Remicade which is a similar immune suppressant medication, there has been research and studies with Humira as far back as 1999 when it was still under development.
Like all medications, doctors should be consulted considerably when the decisions are being made to potentially start medications. Humira is no different. There are many reported potential side effects, and you as a patient should be well aware of what these are.
If you have experience with taking Humira for treating your ulcerative colitis, please consider leaving a review on this page of your experience.
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I got uc diagnosed after a trip Asia. I think I’ve picked up campylobacter and then it all started. After I couldn’t get off Cortison I was forced to take an immunosuppressive medication and most recommended it was Humira. I could get off Cortison with it. However got several infections although vaccinated of some and finally got als tuberculosis. As it’s seldom nobody thought of it. It was very hard to get the ok from the gastroenterologist to stop it. Even i was coughing very much. After 6 months of heavy tb antibiotics I got cured. 5 years I was in remission till recently. I strongly recommend not to take this drug. It’s life threatening.. also cancer is a possible side effect. I don’t believe in the 1% cancers only statistics. My doc says it’s still worth a try. He of course doesn’t have to take it.. better stay away!
I’ve been living with UC since I was 12 I’m currently 27 I’ve tried numerous medications leading up to the humira injections. For me these injections were a game changer I was in total remission was able to live such a normal life. I gave humira a 5 star rating because it was the most normal I’ve ever felt without having to take a pill every day to manage symptoms. Unfortunately I got a rare side effect from the medicine, so now I’m back to square one. I highly recommend this drug if you are looking to live a normal life.
My 18 yo son was diagnosed with UC 7 years ago, when he was 11 yo. He was started on Apriso and 6MP, which caused elevated liver enzymes so allopurinol was added to mix. He was taking 16 pills a day, including vitamins. He did great for a couple of years and then he decided that he didn't like taking all those pills every day and felt like the meds weren't working. He was about 16 and knew everything! Haha! He would miss a packet of pills here and there initially, but then just quit taking them all together after a while. He did ok for a while and felt good. Then he slowly started to decline over the next 1.5 years. He finally asked me to take him to GI because he was pretty miserable. At this point, he had lost about 35 lbs, was down to about 135lbs and 5'11". He was having about 6 watery bowel movements a day, frequent fevers up to 103° and significant joint pain. He had a repeat colonoscopy which showed moderate pancolitis. PedGI started him on Humira in Nov. of 2018. He had a good initial response after a few weeks. Most systemic symptoms, fever and joint pains, resolved and he had a slight reduction in number of bowel movements per day. Since he was 18, we just transferred from PedGI to regular GI. New GI felt that my son wasn't receiving enough Humira, so he did lab test to check Humira levels prior to his next scheduled injection. Lab test showed he had almost no Humira in his system just before his next injection. Doc is increasing his Humira to once a week, plus adding methotrexate and folic acid. We are excited, hoping he will feel better with more frequent dosing. My son has never had a single side effect from Humira and doesn't even feel the injection when I give it to him. I don't anticipate any problems with the new dosing and feel he will improve even more on new regiment.
Absolute nightmare of a drug that I wish I had not taken. Worked well for 8 months aside a constant stuffy nose and more viruses than usual . Joint pain started after 8 months, very painful , then hospitalized for a very serious opportunistic infection along with 3 types of psoriasis which has covered me from head to foot . I have a letter from my dermatologist confirming that the psoriasis is a paradoxical condition caused by Humira. The scalp psoriasis is so severe that I have lost around 60 percent of my hair and it is currently very difficult for me to walk as the soles of my feet are deeply cracked and bleed. I am a 48 year old female with no previous health conditions except for colitis. I am truly happy that this drug works for some people but I would seriously urge everybody taking Humira to be very aware of the very serious and very real side effects and to visit your doctor immediately if you experience fever, aches or rashes. The infection I had was so severe that I am lucky to be here
I used it for 18 months, went to work pretty quickly, week + and sustained pretty well but no help after about 9 months and my immune sys rejected the help.
I have been using Humira for three years. I love it. I do not get sick from colds or viruses, so i know it can compromise your immune system but i have not had that issue. It also put my psoriasis in remission.
Have been using Humira for about 1.5 years and am in full remission. I have had zero side effects. I do have to be on top of seeing the doctor as soon as I get sick but that is a small inconvenience. Very easy to manage the medication.
Humira works well. Put me in remission 95%. Took away psoriasis about 85%. Thinning hair but not too bad. The pen shots sting a bit but worth it.
I have been using Humira now for 7 years. I initially started on a 40mg injection every 2 weeks and that put my UC into almost full remission. However after 4 years things started to awry and my dose was increased to 2 x 40mg injections every 2 weeks. This put put my UC back into remission. I believe that I am now on the maximum dose. I guess I am lucky after reading some of the horror stories about Humira as I have not really suffered any side effects. Apart from maybe dry skin. Humira is the only med I am taking for my UC.
A year of Humira. It kept me in a pre-flare state (some mucus, some blood, 4-6 bathroom trips). It also gave me joint aches, fatigue, and general malaise, nothing I could put my finger on, I just didn't feel well. The worst is it gave me psoriasis from head to toe. I quit Humira after 3 months of constant ear & eye infections and feel a lot better even though I'm in full flare now. I've lost 80% of the hair from the top of my head and I don't know if thats the psoriasis, psoriasis cream, or stopping the Humira.
Know the side effects and be willing to accept this drug may change the rest of your life.... for better or worse.
I tried Humira three months with not results before I switched to Remicade. In hindsight, I should have given the Humira longer to work (it took 6 months to get any results from the Remicade) but I was so freaked out on giving myself the shots when the company sent needles instead of the pen.
I was put on Humira because I developed antibodies to Infliximab (which worked amazingly well for me). I've had 1 or 2 mild-moderate flares whilst on it and currently on high dose alongside Octasa and mesalasine suppositories as and when needed. This combination has finally worked for me but my Dr wants to reduce my dose of humira to just 1 injection a week in the hope that my UC will be put back into deep remission. Watch this space!
I have been using Humira for many years. It helps to manage my UC symptoms to some extent, but not completely. I would give it a B-. I had been on Remicade for 6+ years and found it to be more effective in managing my UC symptoms and inflammation in general. Unfortunately after the number of years of using it the medication was no longer helping so I had to switch to Humira.
Two months after switching to Humira I started having severe joint pains and fatigue. I also got a bout of shingles even though I previously had the vaccine. The joint pain lasted almost a year after ending Humira
Tried Humira after I failed on Remicade. It had little or no effect.
My doctor put me on Humira when Azathioprine stopped working for me. I was a little nervous about the whole self-injection thing, but it turned out to be very easy. The company that makes it does a great job of helping you through the scary stuff, with a "Nurse Ambassador" available by phone whenever you need help, plus lots and lots of educational and instructional material. Turns out injecting yourself is really, really easy! I recommend that if anyone is scared about it, they don't be.
Anyway, the medicine itself worked great. It took about a month to kick in, and after that I had three great symptom-free months. But then it stopped working. My doc did a test which showed that my body had no Humira but lots of anti-bodies in my blood. In other words, my own body was rejecting the Humira. On to something new! That's life with UC.
I am 63 years old and was diagnosed with UC about 22 years ago. I have been on Humira for almost 3 years and it works great for me. Imuran had worked for me until about 3 years ago when I had a bad flare. Following a course of prednisone the flare was stopped and I was put on Humira. It worked for me almost immediately and I have used it since then. I started with a dose every 2 weeks and it wasn't totally effective so my doctor moved me to every week kwhich worked somewhat better, I'm still skeptical that I need it every week, and have now agreed with my doctor that we are injecting every 10 days which is still working well.
Require it once a week. I still gave occasional flairs but is has truly been life changing. I recently requested the shot be updated to the “non-preservative” version and it is virtually painless
Humira was likely instrumental in getting my UC back into remission BUT it caused psoriasis for me which was unpleasant enough to make me take my chances and discontinue it once I was in remission. After stopping it, my psoriasis cleared up quickly and I remain in remission using only Lialda for the long term.
It took 4 months to get me out of the bad flair
That was 5 years ago No symptoms since can eat and drink anythingI pushed it to every 3 weeks instead of 2 Still working great Only do stomach left and right side No pain injecting There Side effects Tired day after injecting And upper respiratory infections
Seems to take a while to work but had me achieve remission along w other medications. Hope it continues to do so. And really hoping it doesn’t have long use side effect/ consequences.
Increasingly severe exhaustion, weakness, headaches, stomach aches, all over aches. Fragile, unwell. Severe bout of cystitis. Very awful strep throat - scary. Didn’t get to see the contra indications info till started self injecting - ie 10th injection/3 months. I wd never have started!
I find if you wipe the area with baby wipes after you have injected you get no swelling or itching
I have had colitis for 18 years had lots of different medications none worked been on himara injections for a year and have been great no problems been for camera today and no active colitis first time in 18 years
Horrible Customer Service. Received the first original starter dose via mail. One mis-fired and have talked to 3 different people there and receive the inquisition: What date did this happen, what time did it happen, where were you, was the cap on, was it upside down, are you sure it mis-fired. Question after question.....Perhaps you are someone who has an over abundance of time to sit on the phone and fight with Humira and Abbie but I am a busy,active woman with a 10 year old boy and a full time job. I realize they do not want their statistics to go down but at some point their customers health, customer satisfaction and medication levels should be of some concern..... However this company could care less about me but how they appear in their drug trials. So much for the first dose I am checking with my doctor about switching to a different medication this is ridicules.
I have been on humira for about 6 months. No major issues. All of sudden after I inject it, the area gets red swollen and itchy. It gets worse 24 hrs after injection the redness swollen and itchy. This is the 2nd time in a row. After several days the area goes back to normal.
However, my UC symptoms are currently still under control, it's just the injection site area around it is irratated.
What is this a sign of ?
Will I continue getting this ?
Is this just a side effect I need to live with? If that's the case I will, since it's still working effectively.
Any comments or feedback would be helpful.
I've had a severe case of UC since I was 16, I'm almost 19 now. I've tried every medication it seems like. I've been on Humira for about a year and lately it has stopped working. I have hair loss, flares, everything unpleasant associated with UC. Hopefully switching meds again soon.
I just can't believe all the negative reviews. To me, has been something like a miracle. No side effects, nothing. It has improved my skin 95% from psoriasis. and my psoriasis was bad!!!.... I am grateful for Humira. Please wait 2-3 months for full results.
I have done only the two starter doses and this week I start my one shot every other week. so far, I see only a change in the frequency of my migraines to be little to none. I'm still having severe diarrhea and accidents. The stomach pain is sometimes unbearable and the nausea is no help at all especially when it leads to vomiting. I am praying that this medication works otherwise I will be seeing a surgeon as per my GI doc. I've had UC for 16 years and no medication has completely worked. it either will start to then stop or not work all together. I have been having this flare up for 8months now and I just want to be the mother I need to be again!
I was diagnosed with UC 1/15. Went through all the beginning drugs which either didn't work or was causing more damage than relief. Remicade worked really well, but I had an allergic reaction at my 5th infusion. Started on humira, but after 4 months blood tests revealed i had formed antibodies. Now about to start simponi. Fingers crossed this will work.
I was diagnosed with UC about 20 years ago. I have been on Humira for almost 2 years now and it has kept me in remission. The only drawback for me is the hair loss that has come with taking the drug. In the beginning I was losing clumps of hair and I was so freaked out. I spoke with my PA and she said it was very normal and that it would subside soon. She was right. My hair still falls out but it seems to go in cycles. For a few months it will fall out a lot, then it seems to take a break and not fall out near as much. The only other thing I have noticed is that I do get a little swelling at the injection site, but have found if I rub in skin circles for a few minutes after the shot, it seems to help lower the swelling. I also itch but just take a Benadryl with the shot and I am totally fine. I am grateful for Humira and hope that it will keep working for me.
I wrote a review about Humira last year, and would like to update yet more side effects. I was apprehensive about starting this drug but my G.I. Doc pushed me into it. How I wish I had listened to my gut feeling and never touched it. I have just been diagnosed with triple negative breast cancer, one of the nasty ones. Its not in my family and is a gene mutation type. Only drug I have taken that has the power to do this is Humira. Please make sure if you have used this to get regular mammograms. It really sucks to have Crohns and now cancer.
I was diagnosed with uc in 2006 after a trip to the hospital and two weeks staying with them I found out I had uc. I have been on most of the maintenance drugs everything from remicade to steroids. I can proudly say through the good lords grace and humira combined with asacol hd I've had only mild symptoms sometimes going months without any. 10 years later I'm still taking asacol hd and humira with great progress and no flare ups. I strongly suggest talking to your dr about both of these drugs they have changed my life
This drug has been amazing for me. It put my UC in remission. I even had energy to exercise daily. After 9 months on it with about 5/6 of those being in remission, I've had to come off of it. About the end of the third of fourth month I could feel the effects of the
Medication wearing off before my shot was due again. After getting anser ANA done it showed I was building antibodies to the Humira and will have to come off of it. Now that I've missed a shot I feel pretty awful. I've noticed ALOT of joint pain when before Humira I had little to none. My left shoulder like you mentioned in your post feels as if I slept on it wrong but it just aches all the way down my arm. I hope this is a temporary side effect that goes away as I start my new treatment regime with either remicade or entyvio. (Stupid insurance doctor wants me to go straight to entyvio but "steps" may make me try remicade first)
I have had UC for about a year and a half. I was on apriso, but the flairs and leg pain tended to still be there. After a horrible trip where my flair up was causing me to dip in and out of my residency classes, I was put on predisone. It worked but I was told I couldn't stay on it permanently so I was put on Humira. Very big difference, I almost tend to forget I even have UC. It has only been about a month, so I am hoping it stays this way! The injections only sting for about two to three seconds and then I dont feel anything. I did tend to feel fatigued in the beginning with the high doses, but that has gone away.
Diagnosed with UC in 2005. Started taking Salofalk. Eventually was taking 8 tablets a day and it didn't seem to be doing anything. Constant flare ups - was going to the bathroom up to 30 times a day, with all the pain, cramping, blood and diarrhea that goes along with it - waking up at night at least once every hour. (had some pretty intense dreams during this period however - that was cool) Fought my way through each day absolutely exhausted. Then entered complications with C. dificile. More meds to combat c. dificile, combined with prednisone helped immensely. Then flare ups returned. A colonoscopy in Nov. 2014 revealed that I have Crohns, not UC and my doctor talked to me about Humira. I was sooo resistant because I really didn't believe any medication would help anymore, and I was scared of the huge list of potential side effects. Also, I hate needles. Whatever - it was WORTH IT. I'm so happy on Humira. I have my life back. I can go places, do stuff, I have energy, I'm happier. It had been over 20 years since I had experienced a solid poop. What a feeling. I haven't experienced any of the scary side effects that were listed, other than a mild rash around the injection site (and it's a tiny bit itchy like a mosquito bite) for a day or so. Meanwhile - my mind is so free and clear now that my every second thought isn't (what's my stomach doing? where's the nearest bathroom? will I make it? etc.) I walked across a bridge the other day - didn't think that would be possible one year ago. I hope it works for you too.
Hello. I'm writing on behalf of my 17 year old son who was diagnosed with UC in Jan 2014. He's been on Lliada, Canasa, Sulfasalazine and 3 separate doses of Prednosone, increased each time, over the past 1 year 7 months. He just started taking Humira after great hesitation on our part due to the possible side effects of lymphoma as cancer is very prominent in our family.
He has not seen any positive effect yet, in fact he's had more diarrhea and frequent bathroom trips. The doctor keeps saying that it takes a few weeks to kick in but he's not optimistic especially with his senior year just 2 weeks away.
I see some positive comments but wanted to know how soon he might see any benefits.
Thank you for any advice and/ or reassurance! He could really use it right now.
I was first diagnosed with UC in 2012 and had never really quite achieved full remission. I absolutely refuse to take prednisone any longer due to the side effects so was having minimal success with other meds up until May. I was put on Humira around the first of June 2015 with the hope that it would create a stable remission for me as my current meds (Uceris, Lialda & Imuran) had seemingly stopped working for me.
I honestly don't think this medicine has worked even one day. My frequency has increased to nearly 10-12 times per day. Diarrhea is more prominent along with mucus and blood ever so often. I have experienced weight loss but at this time I'm unsure if it's due to the medicine itself or from the change in my eating habits. I have recently started to get nauseous while I am eating after only a few bites of food. I either have to step away from the food entirely for a few moments to hopefully come back and finish it or just stop there. I have had to start taking Zofran to even begin to finish a meal. My stomach is turning more tender than usual and I am having a miserable time sleeping as I cannot sleep on my left side anymore which was my primary way to sleep.
For some people this medicine may work wonderfully and to them I applaud you because we have all had such hard times with this disease. For me I don't feel like it was the right choice.
I was diagnosed with UC in 2011 and was forced to drop out of a Master's program due to the weight loss, lethargy, and frequent hospital stays. I have always been an endurance athlete and I was at a point where I thought I would never be able to run again.
I went through the rounds of multiple treatments. I started with Lialda and it caused side effects that were basically a mirror image to the disease. I then moved to Remicade and ended up having allergic reactions when the drug was administered so my doctor ultimately pulled me off of that. I was then moved to Imuran. I was on that for less than two weeks as I am part of a very small population of people who experience pancreatitis as a side effect of that medication. All of this time period, about two years, I was on and off of prednisone as my symptoms would come back up. I was put on a regular dose of methotrexate and Humira as a last ditch effort to surgery; my entire colon is affected so I was looking at losing the entire organ.
I immediately felt a huge difference. Even with the nausea I felt from the chemo I started my longest period of remission to date. After about a year of using methotrexate my doctor pulled me off of that to see if the Humira would suffice by itself. Thankfully, it did. I was able to start running again about half a year after starting the drug mixture. After dropping the chemo I have been able to start a full training schedule again. I have been a little over two years since my last flare.
Humira may not be for everyone, but it has worked really well for me up to this point.
It may work for some but it didn't help me...Dr. finally listened to me and had the special blood work done which indicated anti-bodies...so, no more Humira for me.
I was prescribed Humira after Azulfidine stopped working after 16 years with UC. I went from injections twice a month to every week with no results. I didn't have any bad side effects - although I thought the injections were painful - but I didn't see any positive effects from the medication. The only things that have helped so far are prednisone and the SCD diet. Currently on Entyvio but too early to tell if that will work.
I was originally diagnosed with Chrohns in 2009, started Humira then. I have been on it consistently since. Cant really complain, the only time I felt it didnt work was when there was a secondary infection. Other than that, once treated, the Humira worked. I do have sinus infections frequently. Other than that, nothing negative to say about the medicine.
this is my fifth week on Humira. The only change I've noticed is the blood is 95% gone but all other symptoms are still active. I've had UC for 35 years and this us my worst flare to date. I have a hard time handling the hitters from prednisone so can't take more than 20 mg daily. My question is how long did it take for the Humira to diminish the diarrhea for all of you on Humira? I've had this flare for 4 months now and I've cut out sugar, starch, on the SCD diet, making my own yogurt and waiting to be normal again.
I had read about all of the horror stories much like everyone else. When I finally took it as a last resort to surgery it saved me. My whole colon was affected and the only relief I had before was while on high doses of prednisone (30 up to 60mgs). It took about 6-8 weeks from my first dose but I can now consider myself "normal" again. It feels so good to be back to my old self again. Happy to do anything and now worrying about how long I'll be away from a bathroom. I also take azathioprene and lialda. I have been on both of those from the start. Humira made the difference. Coming up on a year now of feeling great.
PS. The whole ordering process, self injecting pens shipped to your house, and sharps disposal that they will pay to have picked up makes the entire process so easy. I really am thankful if you can't tell ;)
Wow... to read some of these negative post one could be lead to believe Humira causes all the planets ills.
Needless to say I was extremely happy to find my auto inject pen to be virtually painless with ZERO side affects the past 5 months. Maybe I'm the exception.... all I know is I almost declined this treatment based off all the negative reviews. I'm very happy I choose to find out for myself.
I have injected Humira once a week for over a year, along with one Mercaptapurine, 50 mg. tab daily. I am
back to being normal. My Dr. had me on every med on the market and nothing worked, even 6 months of Remicade, it did nothing for me. She suggested I see a surgeon. Naturally he wanted to operate, that is his trade. I went back to my Gastro and she asked what I wanted to do. I suggested the Humira one more time. I
had tried it and it worked for a couple of months and then it quit. That's when she put me on the double dose and it has been great ever since. Thank heaven I was willing to try it again........I just had a bout with Breast Cancer and the surgeon wanted me off it before the surgery. I said I can't be off it, so she wanted a release from the Gastro. Dr Tina called her, they discussed my case and the surgeon allowed me to stay on it for the surgery. Thank heaven. I take Humira till the day I die unless something happens that I can no longer take it.
Hi, I'm on my 3rd week of Humira. I found if you inject into fat on your stomach area it doesn't hurt too much. A bit of stinging but that's about it.
First two weeks my side effects were bad headache, sinus pain and pressure, severe abdominal pain and constipation ( ended up in the ER! ), nausea, burping ( something i never did prior ), and my skin was greasy feeling. Not going to lie I felt like garbage!
I wasn't sure if I would do the next shot but I'm in a very difficult position due to my health so after much consideration I chose to do my next shot 2 weeks after the first ( as prescribed ). I'm on day 16 now and the headache is gone. Still experiencing the other side effects but not as bad. I have not noticed yet any relief from pain or other areas I'm taking it for but my doctor told me it takes approximately 6-8 to notice any improvement.
This drug scares me, and I'm not sure I want to be on it but I have no other choices if I want some sort of life again then I need to try it.
I gave a rating of 3 stars because I don't know yet if this drug will help, but I am praying! Being sick 24/7 for the last 7 years has been no life at all so here's hoping!!!
I hope this helps for anyone considering using Humira. May everyone one day find something that helps!
My illnesses - Sarcodosis , Ehlers Danlos Syndrome, severe Arthritis, Synovitis in every joint, Sacriolitis, uterine/rectal prolapse, hiatus hernia, Rocesea, Psoriasis , C-Diff infections ( off and on ), mild scoliosis, depression, anxiety( due to chronic illness ), chronic pain, and sleep apnea! ( what a list! )
I has a mild case of pustular psoriasis on my right hand and small patch on my left shin. After 4 injections of humira it hospitalized me with a bacteria infection and severe pustular psoriasis from my scalp all the way down to the bottom of my feet. I'm now covered with pustular psoriasis and mortified to walk out of my house. I hate humira and wish it to stop being made
I had UC for 20 years, and was shocked to recently learn it has turned in Crohn's. Humira was started two weeks ago. The shots sting, but they only last to the count of 10. With high grade dysplasia, surgery is the best option so I can finish raising my two young children. Surgery is in the next three weeks, and I would imagine I will go off the Humira at that time. No side effects as of now. Feeling better actually. Solid stools for the most part. Everyone has to make one's own choices, but it's been a positive experience for me.
I read a lot of these reviews and was at first surprised by how negative they are. But then again, as with any review those who are not happy tend to be more motivated to give their opinion.
That being said I would like to provide a story of success so far. I was diagnosed with UC 3 years ago. During the first 2.5 years I have been on Azathioprene, Lialda, Remicade, and Prednisone. What I found was the only thing that would help was a high dose of Prednisone. As soon as I tapered off I would start to be very sick again. This past winter I was only taking Aza and Lialda because my doc said I needed a break from Prednisone and I had stopped Remicade early on because I didn't think it was working for me. I was sick, fed up, and ready to have my colon removed.
I went to see a surgeon and she actually suggested I give Humira a try. Hearing a surgeon tell me to try it was kind of a wake up call as to how serious a procedure this was. I figured I better try it. Well, that was 5 months ago and these last 5 months have been the best I've had since I was diagnosed. I am back to eating and drinking what I want. I still try to eat healthy and not drink too much alcohol but if I want to party I do.
I think the self injecting pens are really easy to use and they ship right to my door so the whole process is almost painless. I could not be happier with my decision to give Humira a try and my wife and two girls feel that way too I'm sure. It took about 8-10 weeks for it to really start working well but ever since then it's been smooth sailing(knock on wood). I definitely suggest giving this med a try even if Remicade and others have not worked for you. I am still on Aza and Lialda as well but Humira appears to be the x factor for me.
Diagnosed 6 years ago with UC. Took every medication prescribed. Have colonoscopy every 6 months. Taking humira 4 months now. Symptoms are so bad, that I am bowel and bladder incontinent. Pull-ups are the most vital part of my wardrobe! the pain and diarrhea are unbearable. my doctor is trying everything. I am scared to eat! my tush is beat up! I just need to feel well. I am depressed and irritable all the time.
I was diagnosed with UC 17 or 18 years ago. Initially treated with prednisolone enemas, corticosteroids and sulfalazine, all of which were already a bit old-fashioned, with known serious side-effects, to be seriously considered as a long-term treatment. Saw no relief over two years
Then switched to another doctor who put me on to aziathiaprine (Imuran) and Salofalk granules (mesalazine), my first immunosuppressants. Things improved very slightly, but still no remission for another 7 or 8 years.
Over the years my diagnosis changed from UC to Crohn's Colitis, to (maybe, I think) Crohn's Disease. It's not clear, and different doctors tend to hand wave around the distinction between them in my experience.
Then was put on anti-depressants (Zoloft, an SSRI), which caused complications. I was jumping through hoops at this point, trying to get put on to infliximab (Remicade), such as going back on corticosteroids to prove to my new doctor that they didn't work before he could advocate for me to receive Remicade through the public health system. As serotonin is involved in signalling for blood coagulation, the SSRIs caused massive bleeding. I had always had bleeding and urgency, with several visits to the toilet per day, but now I was incontinent with blood and had to start using sanitary napkins (I'm a man) and had to come off the SSRIs. Complications ensued and I ended up becoming paraplegic.
Being partly paralysed mostly ended the bowel spasms (ie urgency) associated with UC, along with all sensation in that area. By then I had given all but decaf coffee entirely, but occasionally would get funny feelings across my skin and would feel the need to twitch and stretch, especially after caffeine (a few times people spiked my coffee for a laugh, so I know). I'm quite sure this is how the bowel spasms manifest themselves after the damage to my nervous system. In other words, I still get some nervous system response to caffeine, but the sense of urgency is gone as I have very little feeling left in that area. Nevertheless, by that stage I was getting those funny skin feelings fairly regularly, even without caffeine -- that is, I think that I was getting this new, strange manifestation of bowel spasms fairly regularly.
I still had bloody diarrhoea, which is particularly hard to manage in combination with a paralysed detrusor reflex.
At this point I started an 18 month treatment with Humira. I don't recall any noticeable side-effects, though I may have had subtle things like tiredness or worse mood which I didn't associate with it; certainly people seem to have had very bad experiences with it. Over those 18 months stools improved to become pretty normal, and funny skin sensations (bowel spasms) mostly disappeared, so it seemed to have a positive effect.
I remained on mesalazine & immurane throughout the Humira program and for another 18 months. All together it's hard to know how useful the Humira has been, as my nervous system damage complicates the observations.
I became concerned that being on immunosuppressants for so long was causing me to become intolerant of certain foods. Any remotely "challenging" foods to my body -- ie caffeine, sugar, alcohol -- now result in me feeling what I can only describe as very badly hung over the next day, even after only a small dose. Because of my suspicions, I managed to get off the Imuran, seemingly without any problems.
Also, shortly before getting off the Imuran I had started taking a quarter-teaspoon of baking soda (sodium bicarbonate) in water in the morning and night. This is because I came across a paper in a journal of medical hypotheses which corralled a bunch of medical correlations to argue that Crohn's Disease is a consequence of the body's inability to digest the cell walls gram-negative bacteria properly. Intestinal alkaline phosphotase (IAP) is apparently an enzyme necessary to digest these cell walls properly, but which doesn't operate well in an environment that's too acidic. Thus, the author suggested that a sufficiently alkaline diet might help ease Crohn's Disease. To this end, I continue to take small doses of baking soda, which is alkaline, and it seems to positively influence stool consistency, something which my absent detrusor reflex makes very easy to notice.
I recommend trying to see if baking soda alleviates symptoms a bit, and certainly quitting caffeine. I can't recommend paralysis as a solution to bowel spasms ;-)
Humira has to be one of the worst medications I have taken for my UC. I developed Autoimmune Hepatitis from Humira and now have to be a slave to labs every two weeks, monitoring my liver, hoping that it will go away and stay gone. Not enough research has been done on this drug to know if the Autoimmune Hepatitis will remain a chronic condition, or go away now that I have stopped the medication. Be VERY cautious when taking Humira, and listen to your body - I was told that there was less than a 2% chance of having any liver problems, and look what happened to me. Be your own/best advocate especially when doctors won't listen to you.
After my excruciating loading dose, i developed frozen joints and c diff after a day. I did not know humira could cause c diff or else i really doubt i wouldve taken it. Been struggling with that for the entire year since my loading dose in january. I only took that first day of doses- only three of the four because i fainted from the pain of the shots. I couldnt bare to take the last one. Definitely something i regret taking. I always hate seeing those untrue commercials of the happy humira patients because i have a feeling there is a way larger amount of unhappy humira patients.
After becoming allergic to remicade and hitting another severe flare and waiting weeks for approval...I think it did stop the bleeding despite being allergic to it the whole time(6 months)-I experienced lots of rahes, numbness, tingling, chest pain-even had to have heart stress test, nerve pain, my body is forever changed because of it.
I hope it works for others, but read all you can so you know what to expect for side effects and make an informed decision.
i have been on humira for approx 1 month now. not showing any vast improvement nor am i showing any major problems shown below (however i'm also noticing its around the 3-4 month mark where ppl seem to have difficulties). i will say my urgency has increased. i have about 15-20 second window before ill shit myself, and usually dont make it about 3x per week. take ty3 for pain (it slows my gut down too).
haven't had any lesions or fevers yet, however had to stop the 6MP immediately due to staph infection on my ankle WBC was 2 and hemoglobin was 7.8 (this was before humira though).
ive been a lot worse, but definitely wont accept this to be "normal". i have UC pancolitis and have tried all the sulfa and mesa drugs, canasa, rowasa, remcaid, uceris, apriso, asacol, etc. will update in another 2 months to see if i have any of the bad reactions around the same time period. hoping not... hoping this drug kicks in. dont have any options left other than surgery...
I do not like Humira period. It has made me miserable since starting it. I was diagnosed two years ago with UC and have been uncontrollable. Put on Humira 4 months ago and I have been sicker with everything else since. Had a 2 week long cold. Than had a nasty fungal infection that lasted two weeks in my mouth, basically thrush combined with multiple canker sores. Couldn’t eat without Vicodin. After a week into fungal infection, my sinuses flared and ended up with a 4 week long sinus infection. First 2 weeks was self care, finally broke down and went on antibiotics when I spiked a 103 temp and couldn’t move off my couch. Couldn’t get any air up my nose, nor could I get a sinus rinse to go up. Than the bumps started. Yes, I looked like a spotted leopard on my arms and legs. Erythema nodosum is what they call it. I have giant red patches all over my arms and legs that are hot, painful and sometimes itchy. My ankle is the size of a softball, literally no thanks to the bump on my tendon swelling. I could barely walk at one point the pain in my ankle was do severe. Back on Vicodin I went as well as a 2 antibiotic because the other antibiotic wasn’t working as well so I got to get a stronger one. Sinuses are clear now, start of week 5 but my spots are just as horrible. I’ve asked to be taken off Humira – denied. They actually want to increase my injections!!! Now I’m being referred to the University of WA to see their specialists. I have basically stopped all meds except for prednisone and I feel better. I felt worse on all the meds with no UC results. I think I’m going to hit this with diet now. I’m tired of the meds and broke cause I take so many. Humira may work for some but it’s been a horrible experience for me!
have had UC proctitis since summer 2010 – Average 6-10 BM’s a day, pain between 5-9 every day,
I have tried near every medication and diet except remicade, nothing works and most of it makes me miserable.
after detoxing from 6mp for several months after it crashed my immune system and put me in the hospital with a 104 fever for a week they finally put me on humira.
very bad decision.
I was on it for 3 months at my doctors request, and every day forward after starting in mid march was a spiraling loss of control. A constant daily sever shooting level 10/10 pain in the upper left side of my abdomen, it felt like I was constantly being stabbed. bowel movements 15-20 times a day with a 10 second urgency to shitting myself response (it was so bad i couldnt sleep)and diet did nothing. weight gain was around 10 lbs. loss of the will to leave the house, to eat anything, or to even live became a constant depressing mantra.
I stuck it out in may due to my gi clinic’s request, but it was like inducing torture to inject up… and i would not have lasted another 2 weeks at that rate. I quit taking injections mid may, and suddenly the clouds parted, and the first week i felt 10 % better, the next week 20% better, and so on and so on.
if that was a “light reaction” anything more would have been criminal.
it is now July 22 I am on Zero medications other than vicodin and occasional prednisone for when i have to leave the house… which is rare because this disease has ruined my life and humiliated me past the point of no return. but anyways… I feel 100% better after being on humira and 60% of normal, bm’s settling down to 6-10 a day depending on diet which takes me out of the colostomy territory.
I decided (along with my GI) to attempt Humira as a treatment after failing with Remicade and 5-ASA's and sulfasalazine, and prednisone and rowasa enemas.
Long story short is it gave me severe skin lessions to my hands, scalp, feet, and legs.
Along with this, joint pain increased to a level I'd never known was possible.
Within a few rounds of the injections, the decision was made to stop.
(just my experience, and I'm hoping that some people with UC have had great results with Humira, just didn't work for me)