Remicade side effect?

Hi all.

Not sure who might remember me. My mom (benlar) and I were on this site a lot from 2006-08, mostly on the UC forum.
A little back story: I was diagnosed with UC in 2006 at 15.5 years old. I had 3 major flares, exhausted all medications, and at 17 years old I had a total colectomy and jpouch formation in July 2008. I had five great years. No problems except for the occasional pouchitis. Last fall, I developed abscesses and after a bit of testing was diagnosed with Crohn's. Took me by surprise considering how much testing I had prior to my surgery to ensure I did have UC and not Crohn's. I started taking Cipro to treat the abscesses, and Pentasa and 6mp for the inflammation and other Crohn's side effects. The abscesses weren't getting much better, so this summer I had setons placed to drain them. They seem to be working. My GI also had me start Remicade to help it all.

I was on Remicade for 3 doses just before my surgery 6 years ago. My doctor said it could mean I have built up antibodies and the Remicade might not work, but we decided to try it anyway. I had my first infusion last Tuesday (a week ago). I was given Benedryl and tylenol just in case there was a reaction. Didn't have any problems. Felt awesome for 3 days and then was back to my pretty good days. Last night I developed a rash that started on one forearm, then moved to my other arm, thighs and knees. It would come and then slowly fade. It itched. Called the on-call doctor. She said to take Benedryl and put Calomine lotion on it. None of that helped but it did go away. I woke up this morning and now my joints and muscles are so sore. GI didn't seem too concerned. He's sending a script to check the Remicade levels before deciding if I should go for my next dose next Tuesday.

Anyone else have this kind of reaction? Was it from starting, stopping, and starting the drug again?

You could also consult with a rheumatologist. That's who helped me most when I developed adverse effects (severe joint pains etc) from remicade. I had to stop it.
Hope you feel better soon

I do remember your posts! Can't offer too much, but we retried Remicade after it stopped being effective. Went off it when the Prometheus test showed low, but reasonable levels, no antibodies and big symptoms. Went back on it at double dosing, had 4 infusions in 10 weeks, tested >34(max on the chart), no improvement and a full body rash began that lasted a month. It baffled the docs, as it did not share typical Remi- rash similarities. Could be there are now antibodies, but they decided the whole class of drugs were probably useless. Failure of response is different than failing due to antibodies. Anyway, joint pain and extraintestional issues are possible. I wouldn't fear a small rash, show the infusion nurse or send a photo to your doc or a Derm. Take the premeds, and I am glad you are being tested before infusing. Takes a full week to get back results, so plan for it....and it is not usually covered by insurance.
So sorry to hear about the new diagnosis. Boo hoo.