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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My Saving Grace...so far :)
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 ;)
Humira - RA
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.
Wonderful, Wonderful, Wonderful
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.
Just started Humira
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! )
Bad side effects from HUMIRA
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.
Saved my Colon
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.
humira made symptoms worst!
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.
It's very complicated
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.
I hate it as much as prednisone
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.
The "gift" that keeps giving!
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.
so far so good
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...
Too much too handle!
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!
Nope Nope Nope.
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.
Did not work for me
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)