delayed allergic reaction to remicade

I am not a Crohn's sufferer (yet) but my twin brother and my father both have Crohns. My brother's is very active and after two years of diarrhea and hospitalizations for bowel obstructions he finally switched doctors and had the intestinal resection surgery which went horribly wrong. He got hospital acquired MRSA and also due to the major scar tissue that had built up over the years, his resection wouldn't take and he had to have an emergency surgery 2 days later and ended up on a ventilator in Respiratory Distress and finally with an illeostomy bag for 6 months. His fistula's never went away and here 22 months later he's still got MRSA and an open wound (basically a nature made ostemy). He had been on Prednisone for years as the treatment but the new doc said 'its time for surgery'. After the surgery didn't fix him, he was put on Remicade and had to be watched carefully since Remicade is a major imuno-suppressor and since this could give the MRSA open access to take over. Unfortunately due to the Prednisone his immune system is majorly compromised so he gets colds/flu's and now is majorly allergic to almost every drug they've tried to kill the MRSA. Its really a catch-22 situation.

I read these blogs occasionally and really feel for anyone who has Crohn's or UC or Rumitoid Arthritis. These blogs are invaluable since they tell the real stories of what people have gone through. After my brother had 2 or 3 Remicade infusions he developed severe joint pain and couldn't walk...he said it felt like he was breaking his hips by moving his toes two inches in any direction so he was basically paralyzed by the pain. I did the research online to figure out what was going on (since the doctors wanted to double his Remicade infusions to get him through the problem) and found this discussion on the fact that the Remicade and its potential mouse-protein problems were possibly causing his join pain. I printed off some of the blogs above and brought them into his hospital room and sat vigil til one of the doctors came in. Although they were not willing initially to listen or to take my advice at all, I insisted and handed the intern the print off and asked them to please consider it and bring the topic to the doctors caring for him. They kept insisting that a Remicade reaction would have been immediate and not delayed by 10 days. Two hours after I handed them the proof of your experiences on this blog, they gave him a high dose Prednisone injection and he started to feel better immediately. The next day he could walk and was almost back to normal. I can only imagine what would have happened if they doubled or tripled him up on Remicade...

My brother then went on Humira (Remicade without the mouse protein) and although his fitulas seemed to slow down, they would eventually get worse so his doctor wanted to double him up on Humira but his insurance wouldn't pay for it since that high of a dose is not a proven treatment for Crohns. So now he's on a low dose of Prednisone and also on 6mp for six months to see if that helps.

Thank you so much for discussing these issues online and for sharing your experiences. They are invaluable and I'll keep reading. I hope you all find healing soon and that 2010 brings you health and happiness.

Not sure if you two above posters realize this is a VERY OLD thread. You might want to start your own threads so that you might get more responses.

Oh, the Rem rash is horrible, isn't it?

What about IV steroids? Did they ever give you those? Or put you on oral steroids? Just wondering if you might have more success if the rash is treated from the inside out, rather than topically.

It took about four months for me to feel half-way human after my delayed reaction. I know that feels like a long time, but I mention it because it may give you some hope that things might improve in time.

All the very best to you, and much sympathy.

Ivy.

ps. Aloe vera gel helped me too... not heaps, but some.

It's terrible, isn't it. I know exactly what you mean about the pain. One of the nurses who was looking after me through my delayed reaction said my paralysis etc was like end-stage rheumatoid arthritis... something I'd never heard of, and still don't like to imagine.

It took four months for most traces of my immobility to disappear, and the itchiness lasted for ages too. It was a horrible time, and I'm so sorry you've been through such a terrible experience yourself.

Is there any chance you'll be able to try one of the newer, related, meds, like Humira?

Ivy.

see i don't know if my symptoms are a reaction or MS...i was on 5mg per every 8 weeks and back in january of 2012 my gi dr upped it to 10mg per every 4 weeks...i started to get tingling all in my arms, legs, hands and feet but only after the upped dose...now i'm being tested for the onset of MS...i've been doing research and 50% of people say yes i have ms after remicade and the other 50% say they had tingling from the remicade itself...i'm all upset...remicade is a powerful drug

I was diagnosed with UC about a year ago. It quickly progressed and I didn't respond to the oral medications. My dr started me on Remicade and it was like magic. I instantly felt better, the flare ups were gone, and my levels were all normal. The only issues i experiwnced was my hair thinned, but i was willing to take this as a trade off for my feeling better. It was like i had my life back!

I didn't have any reactions in the induction phase and my dr was shocked I had responded so well. She told me most people don't see improvements until the 2-3rd infusion. All was well until my 5th infusion. I had a horrible reaction; stopped breathing, chest got tight, BP dropped, and temp spiked. It was scary for me, but luckily I take my infusions at the hospital where my GI is. I finished out the treatment uneventful. Quite nervous, but having faith in the only meds that have worked, we decided to give the Remicade another go. I went to my infusion about 2 weeks ago, I had a slight reaction to begin, but I had a nurse handy and some Ativan to keep me calm (so not to add to the reaction) and I finished out fine. Here I am a week into the worst aches and pains I've ever had in my life. My PCP thinks I may have developed a form of arthritis, which apparently is common, but after reading all the forums online, here and other sites, I want to think its the meds. I went months without any issues whatsoever and all of a sudden I'm crippled. I'm 25 and can barely function. My elbow, shoulder, knee, and feet are all radiating with pain going on a week and now it's so bad I can't sleep. I've done the warm baths, Tylenol, and even elevating the joints. Nothing has helped me feel better.

I think delayed reactions seem to be a common pattern. I may have to try some different medications based in my experience and all the input I've read here.

Here's to hoping we all can progress and get better.

Also your GI should test for DILE - drug induced lupus. Make them test you for both.