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Angioedema hives on arms, face, and genitals one week after remicade infusion?

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Crohn's Disease
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Posted 3/22/2017 6:38 PM (GMT 0)
Just restarted remicade and about one week after my second infusion i broke out in angioedema hyves all over my genitals, arms, and face. I itch all over and tried benedryl, a steroid shot, and benedryl lotion without any success. My rhumatologist said he's never seen this before but wanted me to continue infusions but at a slower rate. I'm not thinking it's a good idea, but was wondering if anyone else experienced this but was able to control it with some type of allergy med so they could continue infusions?
Posted 3/22/2017 7:13 PM (GMT 0)
Hi Calvin, back when I was on Remicade they had to give me IV soluable Medrol & Benadryl prior to starting my infusion. My gi also had to lower my infusion rate & from then on I had no problems. And, no I did not have the hives you are speaking of, just a severe reaction when I was first put on it. This may be something to discuss with your dr.

Take care.
Posted 3/24/2017 2:14 AM (GMT 0)
I appreciate the reply although I didn't get the reaction until a week after my infusion. It's been three weeks and I'm still covered in hives and it seems to be getting worse. Steroid shot, benedryl, and zyrtek haven't helped unfortunately.
Posted 3/24/2017 3:14 AM (GMT 0)
I had angioedema like that after a couple of days of flagyl several years ago. It didn't respond to benadryl, zyrtec, or even to high doses of prednisone.

Get tested for c1-inhibitor levels to make sure you don't have HAE (hereditary angioedema).

It's probably a reaction to the Remicade, and if I were you I'd be very reluctant to have another infusion. Hopefully it gets better over the coming weeks as the Remicade clears your system.
Posted 3/25/2017 3:15 PM (GMT 0)
Thanks for the info I'll have to get that checked out. Yeah, I think I'm just going to move on to simponi or cymzia.
Posted 3/25/2017 11:16 PM (GMT 0)
You stated that you just "restarted" Remicade. If you had Remicade some time ago, it is possible that you built up antibodies. I had the same type of problem with a different biologic. The skin issues were head to the bottom of my feet. After some testing and clearing up the rash, the doctor told me I could take another injection. The rash reappeared and was much more severe. I had to do prednisone for quite sometimes to get it to clear up.

That was the end of my 7 years on a great biologic - Simponi.
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