Remicade and rash.

Bear with me here--I did a search and didn't find much recent, so forgive me for starting a new thread if I missed something. I have a long timeline to cover and I think writing it out might be helpful?

I have been on Remicade about 20 months. I was getting them every 6 weeks, but there was an insurance snafu on my January on, so it's been since December since my last one.

My Crohns is great. I am at my baseline normal on that. That's sort of the problem.

For over a year, I have had hives. Primarily on my arms, hands, feet and lower legs. I have kept a spreadsheet on them--no real rhyme or reason--but I did notice that I usually get a "bloom" after my infusion. But I also have them all the rest of the time. Every few days I'll get a few raised spots that will bother me for 3-4 days and then a couple days off and then a few new ones.

I was taking zyrtec daily for a while. I have spoken to my GP, my GI about it a few times. I was referred to an allergist--he prescribed xolair for urticartia, but I don't see any real improvement. My GI seems to think it's not a big deal, not related to the Remicade, or worth living with it because the Remicade is controlling my Crohns well. (These are the three different attitudes I've had the 3x I have seen him)

My allergist also doesn't really think it's the Remicade, which is why he prescribed xolair. Before that, he said I could take zyrtec as much as I needed to, even 3-4x per day if I needed to, but that it would make me hungry. It sure did, and I ate so much I gained almost 50 lbs in a year--but although I had red bumps, they didn't itch. Finally the PA at the allergist suggested I switch to Xyzal, a derivative to see if that stopped the apetite stimulation. At my last appt with the allergist, he suggested that a dermatologist could do a biopsy, so I made an appt there.

She said it looked like scabies, did an office test, which was neg for scabies, and then did a biopsy and prescribed a steroid cream. The biopsy came back "cannot rule out drug reaction". (and also, no scabies!)

I have always thought it was related to the Remicade and it seems like I am correct. I also have random joint pain. When I first went to the GI they would ask about joint pain, but the last couple times they haven't. I asked about it myself at the last appt and they said that asking was not something they usually do and that it wouldn't be related in anyway??

I have already done humira, about 6 yrs ago. I HATED the shots (so painful!) and my hair fell out. GI said I could switch to cimzia, but that if that didn't work out, I might have a hard time going back on the remicade, and the remicade IS working well, so....??? He left it up to me.

I find it interesting that I am 12 weeks out of my last infusion and still getting hives/bumps.

Oh yeah....I can't take benedryl, so I always took zyrtec/xyzal and a tylenol prior to my infusion and never seemed to have a problem at the time.

I guess I'd just like to hear of other peoples experiences, what you think of what has gone on, and what I might consider doing?

Hi bforeal,

I had something similar to what you're talking about. And it was on my face! My husband tried to tell me it wasn't noticeable, but he was trying to get me not to stress about it. I didn't know how vain I was until I could could do a dot-to-dot puzzle on my face. And it itched. Sometimes, but not all the time. They would come and go at varying rates. The GI sent me to the Derm. The Derm gave me steroid cream. Didn't work. Tried other creams. Didn't work. Did a biopsy. Results not conclusive. All of the doctors said it wasn't due to the Remicade. I had never had anything like it before....

Over the past ten years the raised, red, sometimes itchy spots slowly started migrating from my face to neck, then upper chest/shoulder area. The number, frequency, and duration has also decreased. Now I still get these spots, but only a couple every now other week. They take about a week to completely go away, but they consistently shrink and fade each day.

I think it's due to the medication, but I can't prove it. I will say that Remicade has kept me in remission for ten years (with minor symptom occurrence every couple of years). I'm glad I stayed the course with the drug. Good luck.