My 19 year old daughter started Humira (after 8 years with Crohns and on and off other meds) and after 2 months developed an horrific pustualr psoriasis-like rash over most of her body. While she has been off Humira for over 2 months and has been treated with prednisone and topical creams for the rash, it still persists. I have read research literature her dermatologist provided indicating that this is a documented, while rare, allergic reaction to Humira. She has seen 3 GIs in two different states and not one of them has any experience with this or even HEARD about this possible reaction. Anybody out there have this reaction, too?? and what was the outcome??? Names of doctors who've actually experienced this with their patients??? We are in California. thanks, Jean
Humira - Allergic reaction
3/19/08 2:21pm
10/23/08 3:13pm
I am going through the same thing right now. I have crohns disease and i have been on humira for 8 months and about 2 months ago i got this rash on my legs. I went to the dermotolagist and she said it was psoriasis. The rash did not get any better with the creams they gave me so i saw another dermotolagist. She took a biopsy of it and it came back sayin that it was a reaction to a medicine that i am taking. The only meds i was on the humira. I stopped it about a month ago and it is only getting worse. the dermo said she does not know what it is now and she is just very confused. She said it looks alot like psoriasis but the biopsy should that it had no chance of being psoriasis. Now the rash has spread on to my stomatch it covers all my legs feet and some of my arms. I am going to see a specialist in cleveland that deals with nothing but this. She said that he will know what to do. My GI doctor is calling the humira company and seeing if anything like this has ever happened because he has never heard or see it. I also i have read on the internet on a humira website that it can take 10 to 12 weeks for the humira to leave you system.
10/23/08 6:10pm
There is a fair amount of research on this which our dermatologist found on-line for us. It IS a very rare reaction to Humira, but documented, much of which I have read. The people at Humira most certainly should know about this!!!! I will tell you that my daughter even went to the Mayo Clinic in Scottsdale, and this was all new to them, too.
The research I read indicated that most people who stopped the Humira eventually saw their psoriasis clean up. My daughter did the creams and ointments (about 5 different ones) with little success, and is now on Raptiva for the psoriasis, since, you guessed it, it did not clear up after she stopped the Humira. She went backwards in Crohns treatment to 6MP. Will proably try to get off Raptiva after year end and see if psoriasis comes back.
Good luck to you!
1/ 1/10 3:56am
Be very careful my husband has severe RA and since 2005 he has been on Enbrel, Remicade and for the last year and half he has been on Humira. He developed a small lesion on his tongue and within 4/5 months has developed into Squamous Cell Carcinoma and on 12/16/09 he underwent a surgery to remove 2/3rds of the tongue. He will need at least 4 to 6 weeks of radiation. Just be CAREFUL!
2/19/10 12:48pm
I have been on the Humira for 3 months. I stopped due to the terrible rash.
The rash has not gotten better, since stopping the Humira. I think it has actually gotten worse. My Dr. said that I should take 20 mg. Benedryl a day and prednizone starting with a 30 mg dose and tapering down. I will start that today and see how it works. This rash is miserable.
6/10/10 9:39pm
After 8 weeks of humira injections, started developing a pustular rash and red patchy spots all over my body and scalp. 3 Determatologists later I was Wondering if anyone has had any success with any treatments. I have been off humira for two months now and my rash and red patches, (peeling and flaking) has not improved. Diagnosed with crohns in '96 and inflammatory arthritis in '09. Please mail back.
Linda
4/10/11 3:02pm
My husband Steve has crones he is being and trying to get on Humira. My response to yu is that steve got the rash inside and out side of his body as well as tremors from Remicade.
He was on humira for couple months but we could notpay for it so he is not on it as to date we are trying tofind a insurance that will pay for the tTX.
5/14/09 3:54pm
My poor daughter ( 18) has this blistery ( pustular) rash on her arms and legs ( 4 weeks ago) and now has moved to her torso, abdomen and face and scalp. It starts as tiny bumps filled with clear fluid, then a day or two later pus - some look scaly as they clear but new ones keep coming up. It's a vicious cycle- always after her Humira shot. I have taken her to her ped. ( 3 times) 4 dermatologists at Vanderbilt Medical center ( Nashville) and no one knows what it is. My daughter has been cultured 4 times, biopsied 2 times. ..and they say it " could" be a reaction to her Humira. So she has been off Humira now two weeks and is on a mega ( 60 mg prednisone taper ) and it looks better but it always comes back. I am so frustrated. My prescribing MD ( Dr. Schwartz) head of IBD has not seen it either....I feel so sorry for my girl. She itches so badly and the lesions "HURT" like shingles...but they are not. She has been through the mill and I am really scared of the biologics. Has anyone ever gotten off them and not had surgery? My MD says she has to stay on a biologic ( Cimzia is his latest push)It is her senior year and prom is tomorrow.
5/14/09 6:32pm
Well, I wrote the first post here, and this sounds oh too familiar. Really - just like my daughter's case last year (at 19 years old). She stopped the Humira and went back to 6MP for Crohns. That is only kind of working now as she is still taking 5-10 mg of prednisone daily, too. As to the psoriasis, she went through about 5 topical treatments and light therapy before going on Rapitva last July which cleared it up...however, 3 people recently died from brain infections while on Rapitva so the FDA just pulled it off the market last month, March 2009. So for the moment, we are simply praying with our fingers crossed that it doesn't come back - otherwise there is not much left to try that my daughter hasn't already been on either for the psoriasis or the Chrones. I soooo empathize about prom .... Jean
6/ 6/09 6:28pm
Oh Jean- I cannot believe you wrote me back.
My daughter went to the prom covered with blisters and patches of psorasis like plaques. Now her MD ( a real quack--but touted as the BEST at Vanderbilt) has taken her off Humira for 4 weeks. We are still getting lots of blisters( itchy) but the latest is they have moved to her throat and espohagus and vagina. Everywhere there is a mucous membrane. She even has one in her right eyelid. She cannot drink and her bowels are ( of course) diarrhea since off Humira....Vanderbilt keeps trading us around to different specialists( now we are at an adult derm there) she has biopsied her twice again to send off to a leading pathologist who is ( world-reknowned in blistering diseases).
Her GI has taken a ( I'm not a dermatologist stance and pass the back attitude) -- the adult derm thinks it is a blistery Humira induced reaction but has never seen it inside the mouth and other sites. I am not sure she ahs ever seen a skin reaction to Humira either. He tells us we have to stay on biologics and cannot go backwards. I think he is not giving us all our options....why can we not try 6MP or methotrexate. She ahs went from pan colitis to just distal and is much better than she was......do you have a MD I could ask that you trust?
I am very angry and feel so helpless. There is no one who will help her with her pain and they all seem like they are helpless.....we get passed around like a patient no body wants and I am ready to get an attorney.
My daughter is strong but this is ridiculous!! Do you have any suggestions? They are now pushiong us to use Cimzia to treat her UC but we are scared and it's on hold. If Humira has done this to her ---what could this Cimzia do!!
I need to know any resources or advice that you have any MD's who actually give a crap.Vanderbilt loves to act like they care but when a pateint is not doing well---it's a different story. I'm so scared...for her.......Thewy are testing her for phempigus now even though I KNOW its the HUMIRA!!Are there any pending lawsuits on this?
10/16/09 10:34pm
I developed a severe hypersensitivity reaction to Humira. After months of painful outbreaks, a 6th biopsy finally showed leukocytoclastic cutaneous vasculitis. This is an inflammation of the blood vessels in the skin. It has been extremely itchy and so painful when it flares. Excruiating. Still can't wear closed shoes to work. It's crazy. It causes severe skin damage with blistering, then purple to black skin of the lesions, pins and needles (my nerves are damaged) and joint swelling and pain. I developed 4 lower leg ulcers due to the worst of the skin lesions that broke down. Been having wound care treatment the last month to see if that will help. Was put on medium than to high doses of prednisone. Went off after 3 months, no back at a lower dose. I've been off Humira for 5 months and I'm still having chronic issues. It doesn't appear that this reaction is going away even though the Humira has been out of my system since August 25. Very upsetting as the doctors keep trying to help me. I refuse to stay on another immunosuppresent. I'd rather be on 15 mg prednisone (I'm on that reduced dosing now) for months than the other horrendous drugs they have proposed. Am going to be speaking to a top attorney to see what he has to say about my chances for any potential lawsuit against Abbott Corporation or my doctors. So I relate to your daughter's plight. It's just awful. You take the drug for one thing (in my case - Crohn's disease) and the darn thing gives you another horrendous auto-immune disease process. Best of luck with your daughter. I just pray that this goes away eventually. But my pain and suffering has been going on altogether for over 8 months. I don't think my skin will ever recover from the scarring left by burst blood vessels.
11/30/09 9:26pm
I have had the exact same reaction with the leukocytoclastic vasculitis. VERY similar story. I have been off Humira for 4 months now and still getting new outbreaks of it every few days, though not nearly as bad as I was getting before. I too am now on 15 mg of prednisone, down from the 60 that I started on when this was at its worst. Have very bad scarring from the giant blood filled blisters that erupted all over my feet and lower legs.
3/21/10 11:45am
My name is Kelly. I am a male and been living with crohns/uc for 20 yrs. I want to comment on the skin irritation reactions from the Humira. Humira and other biologics like Enberl. Remicade, Simponi etc.. should never be taken unless you are on deaths door. Humira and these other drugs will give you so many problems and other diseases you will never recover. I have talked with experts at the Cleveland Clinic on this. It is best to avoid these drugs at all costs.
3/22/10 9:44am
Kelley- I took her off Cimzia nd methotrexate as she almost died in December due to pneumonia and had to have lung biopsies. We ahve been off all treatments except fro steriod foam ( proctofoam) for her rectum. She is doing pretty good as a matter of fact maybe a little better. We are now just trying to get through the pain ( abdominal, hips and knees)-- got any suggestions?
I appreciate any advice....diet, anything!!!
6/10/10 9:46pm
6/10/10 9:47pm
10/22/10 10:58pm
Hi, I'm new to this site but couldn't help feeling a kinship with you as I read your post. I have PPP and have been taking Humira for four months, I too have sores on my scalp under my arms, on my legs, in my ears and throat. I have stopped taking the humira and am under going some test. One thing you may want the doctors to test for are fungal infections. Hurmia can cause fungal infections and I understand that this is often overlooked. I am very worried myself and don't feel my doctors are doing enough to help me. I hope this is of some help to you. If you find out any information or get some kind of answer, I would love to hear back from you as it may very well help me too.
Thanks, Karen
11/ 6/10 12:53am
My son is 19 has been on remecade for 6 years and was doing well, the doctor wanted to try him on humari to give him more freedom in life. It has been 4 months and tonight on his torso blisters that itch have appeared and he keeps getting bad colds. Reading these comments gives me great concern for his health. Called the doctor and he is not sure sounds like we should stop treatment if it is not to late already. I pray for answers thank all of you for comments
8/26/10 12:28pm
I have been on Humira for almost 2 years (after Remicade stopped working) and have suddenly developed a horrible rash on my face. Small pus filled pimples surrounded by psioriasis-like plaque and very painful to the touch. I've had minor psioriasis on my elbows and knees since I was a kid, way before I was diagnosed with UC/Crohns.The rash makes it impossible to shave, terribly embarrassing, itches like crazy, and I can't stop picking at it.
I'm seeing my GI doctor today, and bringing the 12 page print out from this forum. I'm also bringing the pamphlet from the Humira box where it states that Humira may cause psoriasis to appear that you never had before, even though my psoriasis on elbows and knees has practically vanished since I started Humira, and the fact that Humira is prescribed specifically for some psioriasis patients. Crazy, right? I had my doubts at first that the rash was due to Humira, but I don't take any other meds besides a daily asthma inhaler and Nasonex for allergys, so it's got to be the Humira, even though I didn't develop the rash for almost 2 years since starting Humira?
Humira has been great for my Ulcerative Colitis, but all these posts are disturbingly alarming, and I am going to make my case to get off of Humira ASAP. My last colonoscopy showed my colon to be nearly normal, so I don't think my UC/Crohns is as severe as others in this forum, but I certainly don't want surgery to be my ultimate solution. I wonder if there is a lower dose injection pen of Humira, or can I maybe taper off it by increasing the time between injections. Right now I inject on my thigh every two weeks, but no sign of rash at injection site or anywhere else besides my face, right now. It's been about 3 weeks, and I am really scared this will only be the begginning.
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Hi Jean:
First I wanted to let you know we have forwarded your question to our Expoert, Dr. Todd Eisner. We hope to have an answer back to you soon - he should post a response directly to your question.
In the meantime, I searched our site and was able to find a good amount of drug information on Humira. Our section covers its uses, side effects, and dosage info as well as a bit more general fact and guidance.
I hope this is helpful to you and your daughter. Looking forward to hearing back from you soon on any developments you'd like to share or advice you've received from her doctors.
All the best, sue
Jean: Any news on treatment of the Humira pustular rash? I have been to too many med professionals who don't have a clue. Please comment if you can. Have been off Humira for three months now and no improvement as of yet. Thanks Much. Linda
Jean: Any news on treatment of the Humira pustular rash? I have been to too many med professionals who don't have a clue. Please comment if you can. Have been off Humira for three months now and no improvement as of yet. Thanks Much. Linda
My daughter was treated with Raptiva - which worked - until it was pulled off the market by the FDA since it apparently caused death in a few cases.... my lucky daughter!! Ultimately, it was a matter of about a year and a half total before it ultimately went away. Topicals helped, but only a little bit. She also used, and continues to use, a topical treatment for the flakiness on her scalp. She is on Cimzia now for the Crohns, which also causes a rash on her legs. But this rash is nothing compared to the psoriasis from the Humira. She is feels that this is something she can live with (sometimes can't wear skirts because rash has flared up too much...but not as bad as the psoriasis)
I am SHOCKED that with the continual reaction to this virulent drug - HUMIRA - NOTHING IS BEING DONE ABOUT IT in the medical community and so many DOCTORS don't even have a clue!!! sell Humira is the drug manufacturer's biggest selling drug!!! BTW - THAT probably has something to do with it!!!
Thanks for your reply. I called Abbot and would suggest everyone having this reaction or any reaction to do so. I have called the FDA as well. At $2,000 per month, this reaction has cost me more than the actual drug and I am sorry to say I wasn't on it long enough before the rash developed to enjoy any benefit from Humira.
Tell your daughter to hang in there. At 39, I had a total colectomy after years of struggle with the crohns. Glad I did. The only thing no one told me is arthritis and other autoimmune conditions seem to follow. We must be goin' to heaven!