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Skin issues with Crohn's and/or Humira?


Wed, January 21, 2015 10:22 AM

Hello, I was wondering if anyone has had skin issues who has Crohn's and/or is taking Humira or another anti-TNF-alpha drug. I've had this recurring rash (generally red-patched skin, with some painful finger/toe swelling and itchy bumps spread around -- almost always recurs at same spots on fingers/toes) as well as gum issues (inflamed, recessed, reverses then comes back again with a vengeance).                                                                                                                                                                                 I know it's possible that this could either be Crohn's or a medication reaction, or an opportunistic infection, but just wondering if anyone's had similar -- I'm continuing to see dozens of different types of doctors to try and figure this out (including rheumatology, alt med, GI, skin, etc.) but so far no one has. Got a punch biopsy of toe bump but afraid it'll be inconclusive like the shave biopsy was. Thanks so much.

FPO katieo
Joined Jan 21, 2015

Thu, January 29, 2015 11:53 PM

 Reply posted for bekahbz.

Thanks for your reply! I'll definitely check the gum gel out, and good to know that it's a known but rare side effect. So I did get a semi conclusive diagnosis from biopsy -- it was pernio (aka chilblains). Never ever heard of this before now. But it's fairly easy to try to prevent -- keep toes and fingers warm in winter. A chance that it still might be lupus pernio, though, which would be bad because that means I also have lupus. Testing for sjogrens too due to other symptoms. Good luck, everyone, and thank you!

FPO katieo
Joined Jan 21, 2015

Thu, January 29, 2015 11:46 PM

 Reply posted for katieo.

Hi, YES.  I have has ongoing skin issues since I have been on Humira.  I think some of them have been little infections picked up by being on an immunosuppressant but other skin issues I've had I'm pretty sure are side effects of Humira.  I've developed psoriasis while on Humira, which is interesting because Humira is also use to TREAT psoriasis but in some cases can cause it I guess.  

I have also had bleeding gums just like you described and have wondered if it is Crohn's or Humira.  I read recently it can be a rare side effect of Humira.  I am leaning toward Humira since I am not having other Crohn's symptoms.    My dentist gave me a steroid gel (clobetesal) that has helped significantly.

It's hard to deal with all the obscure side effects and/or infections that come with treatment.  Not as bad as a flare but nonetheless can feel worrisome when I can't figure out what's causing it!  I

I feel ya!

FPO bekahbz
Joined Jan 29, 2015

Sun, January 25, 2015 10:44 PM

 Reply posted for katieo.

Thank you both; I really appreciate the advice and commiseration! I have tried coconut oil and it didn't do much, but protopic does help a lot. Just wish I knew what was behind it. Hopefully biopsy results back tomorrow. I've tried many good drs but I'm always open to new ones, so I'll keep an eye out; I do have several great ones that are still trying their best to figure out and are frustrated along with me, so I'm thankful for that. Thanks again and best of luck to y'all too

FPO katieo
Joined Jan 21, 2015

Sun, January 25, 2015 7:57 PM

 Reply posted for katieo.

Hi!
Sorry to hear you are having skin issues as well. When I was on Humira I would get red itchy rashes predominantly on my stomach but dry/itchy patches on my arms and back as well. At the time I was a competitive swimmer so doctors always blamed it on the chlorine instead of the drugs but when I stopped humira the itching stopped as well. I used coconut oil (you get it at the grocery store) for relief. It smells really good and soothes the skin! Hope that helps, best of luck if they can figure out another solution. 

FPO akr008
Joined Sep 2, 2014

Fri, January 23, 2015 8:30 PM

 Reply posted for katieo.

When I had skin issues, my GI doc correctly referred me to a rheumatologist who helped me to get on the right meds pretty quickly. I had erythema nodosum as well as joint issues, and I was able to get all of this settled by starting on prednisone and then transitioning to methotrexate for maintenance. This may not be the same problem as you're having; however, I think it's odd that your docs have been unable to help you. Maybe you can ask around for a doc in your area that will actually work with you to solve the problem. 

I'm really sorry you're dealing with this- it's incredibly stressful to have things popping up randomly all the time and not knowing why. Hang in there:)

FPO ria75
Joined Aug 23, 2014

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