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 have hadUC since i was ten years old im now fifty. I have never been in remission for more then 8 weeks in my life and that was once. My last med before the one im on was remicade and it did not work. Im on humria and it doesnt work .just got an antibody test it was on level 3 score of 80 ,as most of you know is low. When you start humria if you dont show cliniacl improvement at eight weeks your doctor is suppose to take you off of it. Im way past eight weeks now they want to do 6mp and 40mg of humria a week, instead of every two weeks. Humria doing is 40mg every two weeks period. Sorry for the long posts ,but does anyone have some insight. Chuck
I took meslamine for 5 years and only had minor success in keeping my UC in check. After a month of Humira I am in full remission. I haven't had any side effects and have gained weight (from absorbing nutrients in my food). I will take this for the foreseeable future.
I was diagnosed 12 years ago with UC. From the start I was allergic to mesalamine, the main ingredient it meds such as Asacol, etc..
I was on prednisone for several years and went on the SCD. I was symptom free being on SCD for a couple of years and then started flaring.
in 2018, with strong recommendations from my gastro doctor, I started Humira. It basically did nothing to reduce my number of bowel movements in any way. Late in 2018 I switched to Xeljanz with no better results for 4 months. I then switch to Entyvio in May 2019. I had excellent results with my UC conditions until September when I developed a severe skin rash with hives. After a dermatologist biopsy, with was diagnosed with bullous pemphigoid which was caused by the Entyvio and have now discontinued it.
My doctor now wants me to try Stelara which was just approved by the FDA for UC at the end of October 2019. I am working to get approval from my insurance company to try it.
Bottom line is I haven't had much success with the drugs and I am running out of options. My next step is most likely surgery to have a j-pouch.
Has anyone else tried Stelara? I know it was just approved but I thought I'd ask just in case someone has some experience with it.
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.
I started site shortly after being diagnosed in October of 2008 with severe pancolitis (when my whole colon was inflamed).
For me, it was a very rough start with severe symptoms. Getting bounced from medication to medication was not easy or too helpful. But, I did meet another UC’er, changes several parts of my diet, and of course the rest is history.
Leave a comment, ask a question, take advantage of our past experiences here, use the search boxes, they are your friends to0:)
I’ve written 2 different ulcerative colitis ebooks, you can check them out here.
And, the Free eNewsletter, which has important updates can be joined here.
I was on Hunira, key word was. I had an allergic reaction like none other. I lost about 8 days of time as after the 2nd part of the loading dose I went into an awake coma state. I had pain throughout my entire body, so bad I needed help standing up off of the toilet. My mind was scattered and I had no conception if time. This was the end of this January and I missed things like the Super Bowl and my mothers birthday because in my mind it was Christmas. I was talking in my sleep and basically in a state of delirium.
This is a great idea to review humira from people who have taken it. Not from a pharmaceutical point of view, but from a HUMAN one!
Adam, do you know about RxISK.org? They are encouraging patients to write about their side effect experiences with Humira. https://www.rxisk.org/Research/DrugInformation.aspx?DrugID=4835&ProductDrugID=45825&ProductName=Humira
They also have a campaign I am helping with to raise awareness that the drug makers of Humira have NOT released all of their clinical study data. http://davidhealy.org/abbvie/
What up Reid!
Great to hear from you (everybody, check out Reid’s website crohnsend.com if you have not already)
No, i have not heard of the stuff you mentioned, but it for sure does not surprise me. But again, and although I lean on the non western end of things for treating UC, I’m still hoping that there’s lots of people reading here who have had positive experiences.
Best to you amigo:)
I have been on Humira for 6 months now. I was on Remicade for about 2 years. I have been doing real
good. As far as the going to the bath room it has made me about as normal as I have been in years.
I am noticing some joint pains that I didn’t have before. I just had blood work done and it shows
my blood platelets are low. Another plus for me is the cost of the Humira. I was going broke fast on
Remicade. I can afford Humira but if my blood platelets stay low I may have to go back to Remicade.
I started on Humira in June of 2012. I cannot take any ASA drugs and the prednisone, VSL#3DS combo wasn’t kicking my flare. I have 4 kids and I could not take care of anyone or even myself. I told my doctor I did not want to be sick all the time on an immunosuppressant, didn’t want the side effects, had almost died from Lialda, etc. He very kindly told me I was about as sick as I could be in the state I was in. I would be back in the hospital within days with very few options for meds. I took my loading dose, upped my pred and saw results within 2 days. I went into remission quickly and never looked back. I had swelling and itching at the injection site every time but otherwise, no side effects. After about 9 months, the pharmacy had multiple screw ups and I missed my dose by a week. Shortly after, I started to flare. We did re-boosting loads and I continued in a mild flare until I finally called my GI and asked for 20 mg of prednisone to get over the hump. It worked. When I first started Humira, I had agreed with my doctor that I would take it for 6 months to a year. If I stayed in remission, He wanted me to come off of it. When I flared, he decided I should stay on the Humira. I decided differently. I haven’t had an injection since June 5th. I started to feel a flare coming on but took L-glutemide, Astaxanthin, iron, protein powder, and high doses of VSL#3 DS. Flare averted :) I feel great right now.
I hope to stay off of the Humira and other heavy hitter drugs for as long as possible but if I had no other choice, I am glad Humira is an option.
I was first diagnosed with UC in 1996 and was in remission up until 2011. After a couple of rounds of prednisone (which only provided temporary relief) I was put on Humira in March this year and I am starting to see an improvement now after over 4 months. The urgency has decreased and I am starting to go ‘regularly’ within an hour of waking up. I have also eliminated gluten and raw fruits and veg and take a probiotic before bed – perhaps the diet is making the difference or Humira – either way things are vastly improved. No side effects from Humira other than a slight rash at the injection site the day after… I put something frozen over the area before taking the injection which really helps. So my experience has been positive, I take the injection once every 2 weeks – I also take a multivitamin since I stick to a high protein diet with minimal fruit and veg. Good luck to those taking / considering Humira!
I started Humira 10 weeks ago and I am now in hospital. When I started it I was in a flare.I lost 7 kgs and needed two units of blood along with two units of potassium followed by infusion of Iron. I found when starting Humira it caused me to pass water through my bowel which never happened before since diagnosis late 2011.Im convinced it made me worse.Waiting in hospital now to star remicade today if that doesnt work im off for an OP.Fingers Crossed no op .Trial and error for UC, humira might work for you.Best of luck to all.Dan, Ireland
I want anybody that has had these side effects to please let me know on my website email address please.
Sick the whole time on Humira, 6 months I took it, Lost all the skin on my legs and my fingernails rotted off lasted 14 months until I found something that worked to help, it’s not totally gone away yet. Now my RA levels are so high my primary care doc says I shouldn’t be able to walk, I’ve lost the ability to use my hands and pain is terrible, I have numbness in my arms and legs, and bone pain, I’m having neurological issues not yet seen the doc for these, and now have drug induced Lupus and not sure what all is being attacked, Every day I get up I have to see how bad it is before I can do anything or what might be new. Please let me know if you’ve had these types of things happening to you. I know others, Adam had a couple of things I’ve had and that’s how I found the wonderful site. Please Please Please let me know, at either email address.
Omg…and these drugs are supposed to be taken by humans???
Hi Mat, I to am suffering from strange lupus like problems from the humira, after having two sets of loading doses I started to suffer from severe pain in my feet and knees, this after 13 months is continuing but soon after the other symptoms started it now affects my shoulders , ribs and lower back, and strange rashes , severe fatigue.
I had been on a humira trial 4years ago and had no real side affects then, but this time things started to happen straight away so I refused to have any more humira injections but the joint/bone /tendon pain remains, now I take lots of heavy pain killers just to hobble about and sleep.
After 13 months it is still affecting me and my doctors here in Nottingham, England do not known what is causing these affects or how to treat me, I have been referred to a rheumatologist who also does not know what to do.
I am also on the usual crohn,s drugs while also I have just been put on methotrexate recently , 9 weeks ago but this has not changed anything yet.
Do you have any experience with any treatments that have helped you or anyone else , I would love to hear from you and anyone else that is going through this hell.
I’ve been on Humira for 3 months. Could wrap up in a fetal position almost anytime and take a nap. Tired all the time. Aches/pains in my feet, shoulders and generally just not feeling well. Not sure I’ll continue. In remission, but was in remission almost 2 weeks before starting Humira, so I can’t really tell. I have frequency returning (4-6 times daily – few times more, few times less) and urgency also. Would like to “pop” 20 mg of prednisone to see if it would take hold of this colitus. I was on prednisone for about 3 weeks after starting and that period was good. Then the pain, which in part, I’m sure was from tapering off prednisone, but thats 6 weeks ago. I don’t think I’m going to re-fill px. But done want to stop without discussing with Doc first.
I’m on humira 5 months now and suffer from all the above mentioned symptoms. I find vitamin d helps a lot. The worst side effect for me was and is massive hair loss. Caffiene shampoo helps, wish I had found it earlier. #crohns
I was just reading all the responses above. I was diagnosed with pancolitis in July 2010 and have done all the different meds except for Remicad or Humira. Really didn’t want to try those two drugs and did not like the side effects. Have tried all the others, asacol, lialda prednisone, etc. but with no help. Until I went to an Internist and she prescribed cholestyramine-4 G per scoop 4 gram powder, Commonly known as: QUESTRAN. No side effects with this drug. I was taking 4X daily but down to 2X daily and off all other meds. This is a wonder drug used for older people to control their bowls.
Sounds like you’ve found a great thing that’s working for yourself! I myself have never heard of that before, but that’s super awesome you’re seeing good results! Thanks so much for sharing!
I have u/c must be 19years I was very ill when they got me to hospital I had less than half an hour left .if we have health service we have now I would not be hear. After bad spell in hospital .ihad got to fell a bit better they said I could go home .i don’t know what happened I went down hill fast. .and never rember Mitch about next 3months was taken to bed I made effort and got up I was put on 20 steroids a day and was awake 18 hours a day was crying with pain
Gradually I started to come round .i was off work a year . I was told by health worker to drink Ribena eating was problem then i remberd a dish of old
Portage and how it set hard in empty dish waiting to be washed so I thought
Do it set inside you when you eat it so nothing to losse tired it and still having a bowl a. Day .
I have been given so many steroids over the years .my kidneys damaged
So I cant now take a lot of pain killers was given embril injections
They didn’t work I was given himura
I am amazed to read the shite all these people are wading through to get relief from their own shite. Please, somebody, tell them to go on the Specific Carbohydrate Diet. Adam has written a book, correction, books about it. I am preaching it next to Godliness because it works. And in case you didn’t realise, on the diet you eat all the natural food God gave us, which is why it works. Haha. I’ve been on it for one year and 7 months now after being on all those stupid mouse cell infested drugs the doctors are trialling on you humans and they were no good for me EITHER. Wake up people and get a bit of discipline. Of course you can live without sugar, grains (all), lactose, starch and caffeine. When you see how well you will be it is EASY. I know that in some parts of the USA people don’t cook. They eat stuff already prepared somewhere else. Well, you can stop that right now. Learn to cook. You won’t regret it. Your symptoms clear up almost immediately. You have lives to live. Get out there and live them. At the moment you are chained to your toilet like home detention. I know you feel lethargic and are gonna drag your feet on this one. No diet ever worked for anyone. I know. But surprise, surprise. This one does. I had suffered a severe reaction to Remicade and was told ‘well, we don’t have any option but to remove your bowel’.
I wasn’t having a bar of that. I had heard about the SCD and people saying it kind of worked for them. I decided on a whim to give it a go. Magic. I shouldn’t say that because God gave us good food to eat and what do we do? We eat crap.
So take a look at what you are eating. Don’t eat rice, rye, oats, wheat, barley, or any other gluten free, gut wrenching grain that someone tells you will help. Not quinoa or amaranth or cornflour or anything else.
Oh yes. I sorely miss the taste of warm ciabatta with butter running down my chin but it is worth it to be well. Come February, I will have been on this delicious diet for two years. At which point I may consider introducing something that I ahve (see how excited I am ? ) eliminated from my diet and see if I can handle it maybe once a month. Maybe kumara. Sweet potato, for you Americans.
It makes me so sad to read all your stories because I was where you are at.
Hope is just around the corner. Let God bless you with the natural food sources that will allow your gut to heal.
Problem is, it doesn’t work for everyone. I tried scd for over a year.
I got the approval for humira. I really don’t want to take it. Sounds scary. I want to do all natural. When I was on prednisone I felt like crap. I’m feeling better now but I still end up going to the bathroom. Most of the time my pain is like a 4 or 5. But I seriously want to be off meds…..
I’m one of the lucky ones (if you can call it that). I have distal UC, that flared for the first time 4 years ago. I was prescribed Asacol, which made it worse. I stopped the Asacol and all symptoms went away almost overnight.
Last year, i had typical UC symptoms, which likely were brought on my Advil I had taken after shoulder surgery. Bloody stool, mucous – I lost 30 pounds in two weeks. Prescribed Imuran and Rowesa enemas (fun). Nothing helped. They had me on Colozal in the hospital along with a steroid. I stopped the Colozal and the symptoms stopped.
The past year has been largely symptom free with no meds other than a probiotic and a casual following of the SCD. Four months ago, asymmetrical arthritis attacked my left hand. Two fingers blew up about 3x normal size. I got steroid shots for that, but that didn’t help so more prednisone. Prednisone helped.
Now I have arthritic joints (vertebrae) in my neck.
I pushed hard for Entyvio, but my insurance rescinded an initial approval until i tried a biologic. They said remicade, but my doctor argued that I would likely show an allergic reaction to it. They settled on Humira, which I start next week.
My gut symptoms are pretty normal, but the joint inflammation is brutal. I’m going to try the Humira and see how it goes. The negative reviews are nasty, but I’m at a point where I need to try something.
I was FINALLY diagnosed with UC in March, after many years and several doctors. No meds were working, then I started Humira. Humira has put me into remission, after 6months but the side effects are making me almost as miserable as UC does. I’m exhausted, ALL the time… I developed a pin-head rash on my neck, back and arms- which they’re saying is a skin infection from Humira. My joints hurt. I have bad muscle aches and a muscle enzymes test showed muscle detiereoration. I have had walking pneumonia once and bronchitis once, so far this winter. I am seeking another med at this time, but am terrified of relapse, since this is working for the UC.
No good for me, was sicker on humira than the u.c. Hospitalized for pneumonia, got drug induced lupus, rash all over my face, neurological tremors and systemic candida all over my body. Been off humira for 4mnths and still not right, wish I had never tried it!
I’m writing on behalf of my boyfriend. He’s been diagnosed with UC for 5 years. He’s had an increasingly bad flare up for a YEAR. Has anyone ever had it for that long? I always see a few months, but he’s been bad for an entire year. Blood, mucus, and frequent bathroom trips (avg once every 30 mins). In the mornings, he’s in the bathroom 4 times within the 45 minutes it takes him to get ready for work.
He started Humira and is on his 12th week. He hasn’t seen results. Has it taken some people longer to see results?
My daughter was diagnosed with Crohns at 15 years old. I was VERY hesitant to take remicaid or humors along with Azothioprine. 2 months after diagnosis she was back in the hospital and the Dr was talking resection. I allowed my daughter to take remicaid and azo in combination. After 3 months she went into a remission. Just took her off remicaid and Azothioprine. Finished the introduction dose of Humira and has started every 2 weeks one shot and that’s it. I’m glad we started here on the 2 first, and Humira has mad life a lot easier. Been in remissions over 2 years! I hope things stay the course. I know the risk sound scary, but I spoke to numerous experts before. The risk for cancer was less than 1% on the combination and less than that were females. So we did it and it was the best choice! She has had a normal life so far, eats whatever and does whatever. I thank God for the drugs!!
Oh yes. I sorely miss the taste of warm ciabatta with butter running down my chin but it is worth it to be well. Come February, I will have been on this delicious diet for two years.
If negative reactions to Humira on this site were basis of clinical negative percentage, it’s hard to imagine that anyone would risk it. I looked at RxISK.org and was shocked. What I have not seen anywhere is a comprehensive risk assessment- e.g. percentage of users with each side effect.
My doctor recommended Humira or other biologic but I have rejected the idea because I would rather live with my current symptoms than take a CHANCE at full remission plus a CHANCE of hellish side effects and possible ineffectiveness and irreversable immune system modification.
Even with all the great feedback from this great site, it is very hard for an individual to make a decision.
Everyone’s disease is a little different, including severity. Everyone’s immune system and gut biome is different. So it’s not a surprise that reactions are different. It would not surprise me some day that autoimmune diseases consist of many many sub-variations. In many of the cases, biologics seem to be a last resort short of surgery. How many people who have had their immune systems knocked even further out of whack now wish they had just removed their gut? How many would try Humira if it were free? I pay $20,000 for family health insurance with a high deductible, Humira represents another $10k per year as a possibly fatal experiment. I go on medicare in 2 years and hear that Humira is not even covered by it.
MY LONG SHORT STORY: I’ve had UC for 45 years, diagnosed senior year of high school. Diagnosis mild-moderate pancolitis. Family history of autoimmune diseases like arthritis and asthma. Took 3 courses of prednesone per year for most of that time, with a cocktail of other maintenance drugs. Held the pred to 20mg max- tolerable. Only past 18 months without pred. I currently take Azathioprene (Imuran) and Balsalizide. A very worthwhile blood test a year ago showed that the dosage of of azathoprine I was on was not enough to do anything so slight increase was better. You might want to test if your drugs are actually working. I also take psyilium husk fiber (the unsweetened only please) megaflora probiotics, L-Glutamine.
I tried the SCD for a year and it improved my symptoms but did not put me in remission. It did change the way I eat. I know my symptoms are affected by diet. Lots of exercise. Try to get enough sleep. Yes coffee. No beer. Colonoscopy every two years shows inflammation.
So for someone like me, managing but not at the end if the rope, the choice is between a chance at getting rid of the inflammation completely as many Humira success stories attest, vs. not rocking the boat–just living with low-level inflammation symptoms, and HOPING that the inflammation does not turn into cancer or something worse.
The doctor wants to cure the problem, but as we know, the decision is often more complicated. Hope all this is helpful to someone who is thinking about pressing the button.