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Allergic Reaction to Infliximab?

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Ulcerative Colitis
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DavidEA
Regular Member
Joined : Aug 2017
Posts : 118
Posted 1/25/2021 12:07 PM (GMT -6)
Hey there,

Long story short: Last May my mouth erupted in sores and lips swelled up for about a week. Concurrently, I developed all different types of sores on my hands: some in the form of blisters, some tear-dropped shaped, some with bullseye targets. Prednisone and Valtrex has largely kept this under control. I was tested for everything under the sun (biopsies, scrapes, labs, also tested for Crohn's and I don't have it), including very rare tests for very rare skin disorders, over the last seven months and everything came back negative. They've settled on erythema multiforme via an entire dermatology department who was trying to figure this out. I get occasional flares here and there but nothing like it was.

That said, I'm curious if perhaps this is a reaction to Infliximab. I've been on it since 2018 and had been fine until May 2020. Also my UC has been under control since 2019 and I just stopped Imuran a few weeks ago. It's been since October since I've seen new hand sores and now I'm noticing a few more over the last week. I guess I'm just wondering if, by a long shot, anyone else had a similar experience or might have insight into what is going on. To me, it looks like my immune system is reacting to something but the doctors seem confident it's not the Infliximab. Anyways, if this sounds familiar to anyone, please let me know.

Thanks.
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 18923
Posted 1/25/2021 12:55 PM (GMT -6)
David, I looked up on several well known medical sites. According to John Hopkins 70% of people that has EM have the herpes simplex virus, fungal infections were another culprit & a handful of certain antibiotics. I did not find anything saying Remicade could induce it.

I don't recall anyone here or in the crohns forum mentioning having this issue with Remicade. Sorry this is all the info I could find.
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Jane974
Regular Member
Joined : Feb 2017
Posts : 418
Posted 1/25/2021 1:37 PM (GMT -6)
Here is an article on skin infections and Remicade. They are very common in IBD population on Remicade: https://pubmed.ncbi.nlm.nih.gov/26728295/

I would check the facebook group for Remicade (if it exists) because there are many more members and they tend to report negative side effects (less on this forum). I'm sure someone in the larger group has experienced it. It says online that it can be triggered by infections or medications. If Remicade is the only medication you are on and it's a biologic, then that is a good hypothesis.

I'm part of the facebook entyvio group that has like 10k members. Many of the members were on Remicade and Humira prior and report unusual skin and fungal infections on biologics overall, as well as drug induced lupus. You are likely to find someone there. You can post on the entyvio forum too if Remicade doesn't have one.
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DavidEA
Regular Member
Joined : Aug 2017
Posts : 118
Posted 1/25/2021 2:19 PM (GMT -6)
This is all very helpful. Thanks for taking time to do research and suggesting the Facebook groups. I'll have to join them and perhaps someone there will have had a similar experience or even just have additional insight.
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