Lips & UC

Hello All,

Hoping someone can help me here!! I’ve been getting strange lip sores on & off the past few months. There tiny tiny little bumps but more so there quite inflamed, red, sore and burning! And severely cracked. I had a bad dose a few weeks back where my lips became completely swollen like huge, I don’t believe it’s a reaction to anything as I’m so paranoid what I put near them but was just wondering has anyone had anything similar and could it be UC related?

My doc initially treated me for impetigo (as whatever the lip condition was I think it triggered an infection) now he thinks it could be a bit of perioral dermatitis but I’ve also recently read about Chelitis!!!

I’ve been on a lot of antibiotics recently for these skin issues so my doc is unwilling to prescribe more. I have a dermatologist app soon but hoping someone could help in the meantime as the last few days it has come back on my lips- sore, burning like lips (sore to smile).

I’m on Infliximab infusions for the past two years, they’ve been keeping my UC under control!

Thank you so much

Susie far,

I'm sorry you are experiencing this. It's one of the things that I struggle with.

My dermatologist, GI and Infectious disease doctor have agreed that it's an extraintestinal manifestation of my UC and Crohn's.

I have prescription cream and lidocaine from the dermatologist for the external mouth sores to help when it breaks out... It's occured when my Remicade level is low, I'm in a mini flare, or I've eaten a specific food item. (Like canned tomatoes, fresh garlic, cayenne pepper or a lot of citrus fruits.) I also get similar sores on the inside of my mouth and on my tongue. Internal mouth sores...I use a hydrogen peroxide rinse and a mouthwash that kills germs several times a day....plus the lidocaine when it's really achy.

Please let us know what your doctor says.

Clo

Thank you all so much for your feedback! I will let you know. I spoke with a nurse on my Gastro team and she said all my levels look great but am waiting on my calprotectin levels to come back.

@clo do your mouth sores ever crust over? After 2/3 days mine my lips become quite swollen and crust over and can result in impetigo. I’ve been so cautious with my cleaning and what I put near my face and especially my lips so really unsure where I’m going wrong. All bloods good don’t seem to be deficient in anything!

Thanks again all xx

Long after my UC DX I started to get puzzling skin sores that begin with a spongy tan look which then crusts over. It looks like a brown scab that will soon fall off, but it usually doesn't. 2 derms I consulted in prepandemic years said it's seborrheic dermatitis but not to worry. Recently I consulted a younger derm who asked whether I had ever undergone radiation treatment. (No!) Apparently that can cause some skin issues down the road. At least this 3rd derm is taking interest and advised me to contact her if any lesion turns red that lasts longer than 2-3 weeks. I wonder if yours really turned into impetigo because that would indicate pathogen involvement, or was that an incorrect DX? Another Q is whether biologics can bring on skin problems. Good luck with your upcoming derm consult! / Old Hat

Susie far,

I have been diagnosed with eczema and psoriasis... But not on my lips.

My lips will crust over if I don't put a steroid cream on them when they first start to "tingle or ache". They checked me for the herpes virus, impetigo, psoriasis when I had active lesions. Tests all came back as inflammation with no infection. So you want to get them checked.

I do something that drives my doctors crazy. They tell me to not do it... But I've kept track and it seems to lower the timeframe the are active. I put hydrogen peroxide and then alcohol on them to dry them out faster. It burns like the Dickens but it's what I do. I am not recommending that you do this... Just saying that I do it--and my doctors spin in circles because I do.

I hope you find out what's going on. Anything that can help one of us may help another.

Clo

Susie-- Rather than impetigo it's likely some type of dermatitis that is immune system connected. (Because it clears up but then returns.) Our member Momto2boys recently posted that she gets actinic dermatitis growths on her face that need to be removed periodically, and both her gastroenterologist + dermatologist tell her that they come from her UC oral immunosuppressant med. You are absolutely right to pursue a new derm evaluation because it's never a good idea for us UCers to have oral antibiotics repeatedly RXed in the absence of positive lab test pathogen reports. So I can understand that you feel they are being thrown at you, very frustrating when that happens. / Old Hat