Longtime Remicade User now having intense hives

Hello, first time posting, but I've spent the past few hours reading this and other sites trying to "learn up" before posting.

I was diagnosed with Crohn's back in 2003 and have been on Remicade since. Its kept the disease under check, never really experienced a flare up until last year when I was 2 weeks late on an infusion and was stuck in bed until I could get in to be infused. So I've been very, very lucky with this disease compared to most.

Unfortunately this past infusion I've had a very strong reaction, pretty intense itching all over my body and am now dermographic(if I scratch it welts up and becomes red) along with a sore throat(not a cold or anything, more of an ache than that type of discomfort). This has been going on for 2.5 weeks. I saw my Gastro last friday and he said my reaction to the remicade is elevating since its synthesized in mice, and sent me to an Allergist who I saw today. I've been put on allegra, xyrtec and zantac to try to block as much antihistamine as possible on a daily basis. Hopeful that it helps but also doubtful.

A bit of history- I started getting a bump or two on my torso about 4 years ago a week or two after the infusions, but they were mildly itchy and didn't bother me much and would disappear. Since then the hives have gotten more intense, showing up for 3-4 weeks out of the 6 week period between infusions and being all over my arms and torso. I think because it was gradual I've grown pretty tolerant of the itching, uncomfortable but not slowing me down. Saw a dermatologist 2 years ago because of it but more because my face breaks out and is a mess, but they didn't listen (if I got more than a 2 minutes with them in the room I was lucky) and were completely unhelpful. I've kept a diary of when things occur so I would know what to expect, and took clariten and Benadryl orally and topical to deal with it, to limited effect. I have never had the level of itchiness I currently have. CRAZY. The throat comes and goes, but in the evening is worst.

I have my next infusion next wednesday, and I'm somewhat nervous as I've never had hives this late in the 6 week period, and I worry it might escalate or worse. Anyone out there had to deal with anything like this? I've seen lots of posts with people getting intense hives after a few initial infusions, but none where someone has built up to that reaction over years of remicade use. I get a steroid with my infusion which might quiet things down, I hope.

I'm pretty concerned that I'm going to have to go off Remicade. GI said Humira is an option but isnt' as effective on perennial Crohn's and he's had to put people that switch back on Remicade. Ok, sorry for the long rambling first post, and thanks if you have any advice.

Hi Welcome to HealingWell, Have you told your GI doctor about
the issues with the Remicade. Also maybe ask you doctor about Humira it also should keep you Crohn's in remission.

I didn't read the replies in full, or your post in full, I skipped to where you talked about your symptoms. I normally read it all, but I am finding myself very......short.....attentioned right now. lol Yay Prednisone...anyway that's my own issue. lol
The Doctor's that I had when I had this reaction to Remicade called it Serum Sickness. I have found that if I use actual medical terms with my health care professionals, they take me more seriously. It's a build up of antibodies to Remicade. Usually happens with prolonged use, or if you stop taking it for at least a year. I was a rare case where it happened with only a 6 month gap between being taken off and put back on. Go me! lol The good news is, it's a reaction to the rat protein used to make it, and Humira is basically the same medication, only made with Human protein. The Serum Sickness is a reaction to the rat protein, so you shouldn't react to Humira. Mind you, I am not a medical professional, I am just a patient. Good luck!

thanks for the comments, the antihistamines aren't doing much, hopefully my GI will get back to me tomorrow. Probably going to talk about switching to Humira, I understand his concerns but I can't function like this.

I had Remicade years ago.  Then my insurance company refused to give it to me.  After a year, I ended up in the hospital where it was finally approved. I had no problem with that second treatment.  However, when I went back to get my 3rd, I had all kinds of problems.  When she had first started the drip, my heart felt like it had fallen out of my chest into my shoes.  My BP and heart rate dropped.  She immediately gave me Benedryl (or whatever it's called in IV/shot form).  The doc was called and said to wait 30 mins then start the drip at a slower rate.  All was good for a while and then my palms and bottoms of my feet started itching like crazy!!  It was an itch you just couldn't relieve.  Called the doc, more Benedryl, wait 30 mins, start up at an even slower rate. 

Third time was going well until I felt like something was crawling up my stomach, arms and chest.  I moved over to a mirror and there I watched hives creep up from my chest to my neck to my head.  The nurse came in, told me she didn't care what the doc said and that I wasn't getting any more. 

I begged my doc later to let me try it again and he told me know.  Unfortunately, Humira wasn't approved for Crohn's at the time.  But later, I was given the OK to be in the drug study for approval.  It was wonderful!!   It put me into remission for almost 6 years!  Sure, life wasn't "normal" but it was still SO much better living without so much pain and half the trips to the bathroom! 

Sorry you are dealing with the reaction.  If you can press for Humira, that'd probably be the best thing.