Dear Adam,
Indeed, these skin manifestations can arise in patients treated with biological therapies. Although they are rare, they may in some cases, lead to cessation of therapy in patient with refractory dermatological treatment.
The best I can suggest you is to see an expert dermatologist who is used to deal with these manifestations and it will help you to handle the problem.
Complete cessation of biological therapy due to these complications is hopefully rare and we should try to continue the treatment which is very useful for the gastrointestinal disease whenever possible.
You will find the full article attached.
Good luck
Best regards
Dr JF Rahier
2011/1/5
Dear Dr. Rahier,I was very relieved to read the abstract about your recent study involving IBD patients.I think you can for sure add me to the list as well of patients who discontinued the use of TNF medicine(Humira) after developing horrible skin problems.I even wrote a post with pictures documenting the problems on my blog website:the actual pictures are here: https://www.ihaveuc.com/side-effects-from-humira/…Would it be possible for you to send me to full article, so I can post it on my website, as several other people with UC have complained of the exact same thing happening and have also discontinued use of the medications for the same reasons? I think they would be happy to know your research results.
Kindest regards,
Adam
(Above is the email correspondence with the lead doctor who conducted the study over in Europe)
Below are my own personal Interpretations of the study he sent.
The title of his study is:
“Severe Skin Lesions Cause Patients with Inflammatory Bowel Disease to Discontinue Anti-Tumor Necrosis Factor Therapy”
- The study looked at 85 patients (69 with Crohn’s Disease, 15 with Ulcerative Colitis, and 1 with indeterminate colitis)
- The purpose was to examine more closely the development of skin lessions (psoriasis and eczema) after patients started using anti-tumor necrosis medications like Remicade and Humira to treat their inflammatory bowel diseases
- Another larger study from the Lille Center in France found from a group of 562 patients who started using one of the anti-TNF medicines like Humira or Remicade, 28 patients or 5% developed inflammatory skin lessions like eczema or psoriasis
- The most commonly affected area when a patient came down with psoriasis was the scalp
- Besides infections, eczema and psoriasis are the most common dermatological side effects of these medications
- “It is generally accepted that the development or worsening of psoriasis or eczema during treatment with anti-tumor necrosis factor therapy can occur at anytime from days to years after drug initiation” Dr. Jean-Francois Rahier’s study 2010
- Overall a 5% risk of developing psoriasis or eczema from starting anti-TNF medications
- About a 1% chance you will need to discontinue treatment because of bad skin issues
- In almost ALL patients, the skin problems went away after stopping the use of the anti-TNF treatment
“We would not advise a change in the TNF antagonist if the lessions are not responsive to conventional treatment…” Dr. JFR
Thank you again Dr. Jean-Francois Rahier for sending over the information and for being such a big part of this very interesting study. There are several of us who have ulcerative colitis who are dealing with Remicade or Humira related skin issues and this study will help us put an end our questions.
-Adam
the pdf file emailed to me by Dr. Jean-Francois Rahier. It is very detailed, but it outlines the entire study and I would encourage anyone to read it if the above information is interesting to you.
To open up the file, you will need to be able to download a pdf type file.
Here is a picture of me when my skin problems after taking Remicade and Humira were nearly at their worst. For sure didn’t want to freak too many people out on this beach:
**A new study which touches on many different anti-TNF medications and the skin lessions effects: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4804366/
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.
Adam love your site. I read for my son that has UC He is on Remicade and having peeling skin on face and scalp. I haven’t seen anywhere here any post on Barnett Continent Intestinal Reservoir. nd alternative to illeostomy which is on the inside and you put straw or some kind of way to empty the bag. It is a Have you heard of it. Thanks Pam Can you email me back as I cannot find answers to my questions that I have posted.
Hey Pam, I just wrote a question on the facebook group about the Barnett Reservoir. And, someobody already responded saying they knew a bit about it. if you want, you can join that group, at facebook.com/ihaveuc
Also, I’ll see if that person could write a response to your comment here as well.
Probably 15 years ago I was diagnosed with Fibromyalgia..Was treated with many meds and even one doctor decided he could no longer help me because nothing helped. I suffered with eczema, bloating,diarrhea, muscle aches,joint pain,awful fatigue,depression, stomach problems, memory fog and much more..I just was at my wits end because all the symptoms didn’t seem to go together..I heard about my niece being so sick and depressed and was just too sick to even work..(This is strange but when she was in teens she could not tolerate cinnamon.) She researched many doctors and found one that knew what was wrong..Tested and she has Celiac Disease. Instant help for her..Quit eating any gluten at all.She was lucky that it hadn’t did a lot of damage to her intestines and stomach..Within a few weeks she was well enough to start looking for a job..She told me I needed to be tested because I told her I had all the symptoms that she did..Tested and yes I have it and now and gluten free. WOW what a great thing..Within 4 days I was better..It was like I was reborn. It took a few months for then eczema to really start getting better and if I stay away from any food with acid (like grapefruit,limes,lemons,tomatoes,oranges)It goes away. I have small flair ups but that is mostly when I used cleaning products..SO many of the problems that people say they have may be an intolerance with gluten or you may have Celiac Disease. Please try the test or quit eating gluten for awhile..PLEASE…..Oh yes, I forgot,,,I hated cinnamon .The smell and sick stomach after eating..Now she can tolerate it and so can I….
Hello Pam. I’ve had several different surgeries and different versions of ileostomies. Even if I haven’t had a particular procedure, I usually know quite a bit about all of them. Feel free to ask me any questions. I’m not shy! My email address is anothernametoremember@gmail.com Looking forward to hearing from you!
Brooke
Hi Adam, I just got a phone call from the nurse saying to come in next week to chat about Humira. This lead me to read over your posts and pictures showing the side effects of this Drug. I have UC myself for over 8 years, at the age of 31 I feel like it might be time to try a new drug but I’m really concerned about trying this one. Infact the skin problems isn’t on my list of major concerns (is seems very nasty), for me the side effects of possible nerve damage, breathing problems really has me rethinking.
As of right now I have some nerve issues from playing computer games for years and a back injury at 24 + a curved spine, on top of this I have had 3 pneumothorax’s (collapsed lung) since the age of 19. My eye’s seem blurry if looking at the tv from a distance ( i know it could be just old age :) ). My skin has never been perfect, always some random rash or spots on inside of arms/chest, sometimes on back.
Depressing list is depressing so I will stop here lol
Anyways Im really looking for someone to give me some major advice with this Drug hurmira, I don’t want to end up like a cripple from it’s side effects, should I be so concerned with it all?
For every 10 negative side effects I read I see like 1 positive, guess their is only one way to find out for myself.
Rich
Hi Richard,
At the end of the day, it’s always your decision as to what you want to try in terms of treating your UC. That’s never going to change.
But, there are some things I definitely want to point out:
First, one of the reasons I started this site several years ago was because of my unresolved skin issues that were due to me starting Humira. None of the doctors I had met with really had a clue as to when things were going to get back to normal (after I stopped the humira), so I figured I’d be able to find some others online through starting a website. AND, there’s a pretty good chance this particular story wouldn’t even be on this site had I not ever taken Humira, or had I been like the majority of people who do not have this type of rare side effect from it either.
Second, one of my best friends uses Humira to treat his arthritis, and he’s had pretty good results. Not perfect, but pretty darn good with very little side effects.
Third, with regards to what you said about 1 in ten stories being positive ones, I agree with you to some extent on that. And I’ve been trying to figure this phenomena out for a few years myself, and I personally believe the percentages are way different, but in general I think people are more likely to complain/point out bad experiences on the internet, compared to taking time out of the day to write about something that worked the way they thought it would.
In the end, I hope you end up come to some conclusion that you’re at peace with regarding “to take or not to take”. There’s always risks in trying, and also risks in not trying. You’ll make that decision, and either way life will go on.
I wish you the very best no matter what you decide.
-Adam
Thx for the fast reply Adam
I’m swinging towards not taking it, I had to recall how my last 3 years of the 8 have been, 3 years ago I was weak, thin and started getting aniema, 2 years ago much the same but I had to travel to Turkey for my sister’s wedding which I did and had a great time but then it went a bit pear shaped and a shortness of breath/faint feeling came over me on the plane home just as it was on the run way moving.. rushed off sent to hospital I was having very low blood pressure due to my aniema, 6 pints of blood, 5 days and a £8K medical bill later (ops I forgot to fill in the part about my illness on insurance form) I was omw home and since then I have been up and down with my blood count.
My Dad had UC never took drugs and cured himself 100%, my younger sister has UC and she can have bad flares but settles down well and will not take any strong drugs. I have been off steriods for 2 years now well almost and im not worse than I was 3 years ago (not much better but still)
Anyways thxs again for your website, I will be back reading more tips from people, I think I shall skip this drug for at least another year and see how it goes.
I just reposted this link to another site of this poor woman having very extreme psoriasis from remicade treatments. the doctors weren’t sure what it was but i’m glad I found this on your site to show her.
Hey Adam, I am 45, and was diagnosed with Ankylosing Spondalatsis 14 years ago. I have has tons of treatments over the years but have not found anything to date that has worked. I tried Embrel about 5 years ago, however, had some skin lesions that developed in the injection site areas…I was scared and stopped.
In Dec 2013 I was given the option for Remicade. I had 4 infusions, however, did not feel that they were working, so I was planning on telling my Rheum that I wanted to up the dosage, when I developed pustular blisters on the palms of my hands. Within days, I had lesions all over my legs ,arms, and the truck of my body which are extremely itchy and ugly. It took me over 2 weeks to get into my doctor and by then it was unbearable. My family doc though I had a fungal infection and put me on antibiotics and a topical cream to try and clear it up. Finally, after being on the med’s for a few days I was able to get into see my Rheum who in turn said I need to see a Dermatologist. He has taken me off the Remicade and did say that the lesions were a result of the infusions. He wants to discuss another biological treatment…I am terrified to try anything else! I have now realized you need to do tons of research before agreeing to any of these medicines. I wish I had read some of the blogs I am reading now because at least I would have had pleanty of information to make a more informed choice. Thanks for posting!
Hi Jacqueline,
I too have AS (along with Crohn’s though). I am 41 now but was first diagnosed with AS in my early 20’s. I had the exact same reaction you did to Remicade and thankfully my skin began clearing up after I quit taking it. I hope you are having the same results now too.
Although I’m sure you have tried various NSAID’s but just on the rare chance you haven’t tried Indomethacin yet, I highly recommend you ask your doctor about it. I was on it for years and it was the only pill I needed to take….it worked really well for me! Unfortunately I developed Crohn’s in my late 30’s and that put a stop to any NSAID’s for me from now on. Now I’m just using pain meds during flares and doing my best to maintain a good diet but I’m still looking for an Indomethacin replacement that would be safe for me (hence my failed Remicade experiment).
If you haven’t tried it yet and do decide to give it a go I wish you the same results I had all the years I was on it. Best of luck to you
My daughter (17) has been on Humira for 3 months now. She was diagnosed with UC in 2011. She had a total colectomy (rectum removed too) in 2012. She has a j-pouch. She was disease-free until February, 2014. According to the doctors her disease came back so now they’re calling it ‘undetermined IBD’. She has had eczema (mild case on her hands only) on and off since becoming sick. But now on Humira it is very bad – cracked, dry and painful. But not what? Humira isn’t effective in controlling her IBD symptoms. She’s seeing a dermatologist this week for an opinion. Any advice is appreciated…
Hi Elizabeth,
I’m very sorry to hear what is going on with your daughter, but there is a good chance things will resolve or at least get much better.
You should for sure read the study that I have created a link to in the post above, print it out, and bring it in to your dermatologist because there is a VERY GOOD chance that he/she has not read that study by one of their peers yet.
Here is the link to the study I’m referring to:
https://ihaveuc.com/ulcerative-colitis/humira-remicade-psoriasis-eczema-study.pdf
How long does the lesions take to go away? I have had bad eczema lesions all over my body and i believe its from the remicade…. My doctor wants to switch me to humira but after reading this blog, i am going to decline.
Hi David,
I would suggest you print out the study and hand it to your doctor to see if your doctor has awareness to it and/or other related studies.
As for how long, in my case, the overwhelming majority of the skin issues went away within a half year after discontinuing. However, on and off for the past 5 years I have seen some slight re-occurrence of similar skin issues on the sole of my right foot.(much less severe than during the medication times, but still a reminder..). It seems to be a bit different for everyone though regarding the timing and going away question. I wish you the best, adam
Hey Adam, I appreciate you getting back to me, how did you deal with those 6 months? I’m seeing a traditional Chinese doctor and she has me on a diet plus herbs but I’m not seeing much improvement, in fact it’s actually getting worse. So did your psoriasis get worse in those months before getting better? I’ve been off of remicade a little over a month now and it’s so hard to deal with these skin issues.. How did you cope? Any suggestions would be greatly appreciated. Thanks again
You know David, It’s been a while, so my memory is pretty fuzzy, but I’m pretty sure the skin issues did get worse before they got better, meaning the amount of surface area increased before it decreased. Much of my anger and frustration was about the fact that I had stopped the meds, both humira and remicade yet things were not improving and “going away”. This was in the few months right afterwards.
How did I deal with it…very similar to how I’ve dealt with painful flare up situations in the past. Positive thinking, and feeling deep down that our bodies are pretty incredible and can heal and come back from awful scenarios. I wish you well, and I’m sure you’ll turn the corner soon and start feeling better inside and out. Hang in there. You’re not the first one in this situation. And the reality is that you won’t be the last. So keep your head up, no docs have a silver bullet fix for this, it just takes time, which is sometimes the hardest. But it will pass.
Hey Adam, thanks for getting back to me once again. Did you use steroid creams to help fight the nasty plaques or was there some homemade rememdy? Im at a dead end here, bought so many topical creams, nothing seems to help except the steroid creams.. and those I dont want to use. Time is not passing by quick enough for me.
David,
I did use several steroid creams, none of which seemed to do any good. One of which was extremely strong, and I wish I’d never used it in the first place as it is said to thin your skin…
As for homemade remedies, some people have written that hemp oil has been helpful, especially with the cracking.
This is an old post but I wanted to join in as I have exactly the same skin problems with Humira! If you see this post you can contact me on my email!
Problems seemed to come and go but now its getting more persistent, and gradually getting worse as well in various parts of the body, mostly hands and legs. Very annoying and itchy! Tar based natural creams seem to help me the most, more than cortisone creams. Hope we could chat more on this!
my 11 yr old daughter has developed severe psoriasis from humira/remicade. she didn’t get the rash until we stopped humira because it wasn’t helping her. she only took remicade from jan 2015- april 2015. developed antibodies. started humira in june 2015-aug 2015. noticed bumps 2-3 weeks after last inj. now she is covered with psoriasis. how long before this goes away. it is still getting worse. are you still on humira?
Hi Shannon,
I am very sorry to hear about your daughter.
I myself have had the same battle you are talking about as you have read, and for most people, within several months after stopping use, the psoriasis/blisters/skin lessions clear up. Not always 100% for everyone, but that is the case for most, so I would defintely keep your spirits up that this will not be the case forever. I am suspecting that she is dealing with this on her feet and hands as well as some other places as those are the most common sports for these types of symptoms.
One person I communicated with recently felt that tumeric was a major part in these exact symptoms going away. Tumeric is also helpful for all sorts of anti-inflammatory things. Its a simple spice, you probably use it/eat it with certain foods. Anyways, I put it in my daily smoothies since it doesn’t change the taste, and many here have talked positively about it for colitis symptoms… Here’s a recent video on that which you might enjoy peeping out:
https://ihaveuc.com/tumeric-olive-oil-smoothie-ingredients/
wishing you and her the best,
Adam
Hi Adam,
I have been taking Remicade every 8 weeks for almost 6 years for UC and borderline Crohn’s. Within the last year I have developed horrible weeping rashes on my scalp, peeling skin on my shins and inside my arms at my elbows. I went to a dermatologist and said it looked like psoriasis and eczema. He gave me some foam for my scalp and D2 pills. It cleared up almost immediately but then it came right back with a vengeance after my next infusion. I’m currently fighting these rashes with turmeric and the rashes on my body seem to be less fierce but my scalp is another story. Luckily I have long hair and can hide most of the rashes. I currently have a mild bumpy rash under my arms, most of my torso and behind my knees. At my last colonoscopy, Dr. said I was very close to being in remission and would only need Remicade once every 6 months. I want off this stuff but I’m scared that I will come out of possible remission.
Hi Amy,
My situation is almost exactly like yours! Was taking Humira for the past 4 years for UC. Worked well to control my UC symptoms (which also included joint paint and other weird issues) and I was also very close or practically in “remission”. Several months ago, I started experiencing eczema/psoriasis like rashes all over my body – including my SCALP! My doctors approved me going off of Humira and I have been off for 7 weeks but rashes are still active. Mostly on upper body – torso, back, arms. My scalp has been the worst and resulted in a severe infection and hair loss. I definitely don’t know your unique situation, but all my rashes and scalp continued to get much worse after every Humira injection since the problems started – it seems like once it starts it doesn’t stop. My UC has been fine for these 7 weeks, i’m taking 2000mg of turmeric daily plus probiotics and zinc. Just wanted to give some insight since our situations seemed similar! Can I ask what the foam for your scalp was?? Looking for any and all solutions… hoping everything clears up the longer im off medication. best wishes!!
Hi Adam!
I am so relieved I found you and your story.
I have been off of Remicade for 5 months and I have been obsessing over what I can do more to help my poor skin. My feet are cracked and so painful along with the palms of my hands. My legs are full of rash and I’m so depressed over the way it looks and feels. My Derm just keeps prescribing steroid creams and I know how terrible they are for your skin- I only use them when I can’t take it anymore and need them to fade for a few days. If you could send me the case study you refer to, to show my Dr. I would greatly appreciate it. Also any suggestions for my painful feet and how i can alleviate any pain. Thanks In advance!!!