Starting Remicade again years later

I was on Remicade from about 2004 - 2008, and stopped in 2008 because my crohn's went into remission. Amazingly I was nearly symptom free for over 4 years. But this summer my symptoms came back, and no medications have worked (e.g., Lialda, Canasa, or Prednisone). So my GI said I should try one of the biologics.

I didn't have any side effects from Remicade the first time around, so I picked it over Humira or Cimzia. My doctor had me do the Prometheus antibody blood test, and the results were that I do not have the antibody against infliximab.

I have my first Remicade infusion next week. Even though I didn't have side effects the first time around I am scared about it. Have any of you restarted Remicade after a long absence where you know you do not have the antibody? If so, how did it go for you?

Thanks!

I recently tried to restart after 3 and bit years of remission and being drug free. I didn't realize there was a test to check for antibodies though, wish I had known that.

I had three infusions, premedicated each time with benadryl and steroids. First one was fine, and then the second and third I got flushed and my chest felt tight about an hour in. The nurse slowed/stopped the infusion and it went away. I was then able to continue and finish those infusions.

In addition to that reaction, though, the drug was not as effective as it had been in the past, so I have moved on to Humira.

Hope you have a better experience!

Thanks for sharing your experience. I'm hoping Remicade will be as effective for me as it was before, but the antibody test can't tell me that. I'll just have to see how it goes and hope for the best for now.

I had a ten year break between infusions.
I had two infusions in approx 2001.
I had my next two infusions in 2011.
First infusion went fine - but a few weeks after it I had a stuff neck - which was pretty weird.
Second infusion - had a severe allergic reaction which gave me a seizure - this happened during the infusion - about an hour or so into it.
After that - they put me in Humira.

I was on Remicade for 3 years 2003 - 2006, then i had a bowel obstruction. Since then I have basically been in remission. Now - I have a fistula and will start hard hitting remicade infusions. My doc pressured me to remicade and I wanted a different drug. I am terrified of thie freaking drug - was before and now more so. At least I'm not crazy!!!!

Samboi, that sounds so scary. I have never been through anything like that before. I hope Humira is going well for you. I am scared of all the medications, but picked Remicade since I had success with it before.

hillcountrygirl, I hope you will do well on Remicade and that it will relieve your symptoms. When I took it the first time around I had no side effects, and it put me in remission for 4 years.

Quick update: I had my first IV infusion on June 28, and it went really well. The nurse gave me a Claritin and 2 Tylenol for the pre-medication. I am happy to report that all went well, and I didn't have any bad reactions during the treatment. It's now been 4 days and I am still doing well. In fact, Remicade seems to be working already: Today I was leaking a lot less than usual. Hopefully all will continue to go well. I have my next IV infusion on July 12.

That's great news Coco.
Fingers crossed for you it all goes well.

I've been meaning to tell you that I had to be taken off Remicade after my first treatment. I think I must have had a delayed allergic reaction or something, because 10 days after my first treatment, my joints and muscles starting hurting like crazy. I couldn't even chop vegetables to make dinner, for example, and I could barely lift anything. The pain would move around, and it lasted for days. For example, one day my left wrist and knees would hurt, then my upper arms would hurt, and so on. My GI had to give me 40 mg of Prednisone before it would go away. She said this is a rare but possible reaction from Remicade, and that I could no longer receive Remicade given this reaction.

I am so sad about it. And I don't understand, because I was on Remicade from 2004 - 2008 with no side effects at all. This joint/muscle pain was much worse than my bleeding and leaking from Crohn's. And the worst part is that even after one treatment Remicade was helping with my Crohn's symptoms. I had such high hopes that I would do well on it again. Now my doctor's recommending Humira, but after my bad experience with Remicade I think I am going to try to avoid the biologics for as long as I can take it.

Hi Coco.
Would you reconsider a biologic?
My second go at Infliximab was a disaster too - as you know.
Humira has worked a treat though and has put me in a blissful state of remission.
I was petrified about starting it - and delayed doing so.
I wish I hadn't.
It's sorted me out beautifully.

Hi Samboi,

Thanks for your encouragement. I'm so glad Humira has made it so you are in remission. Oddly, I think doing the injections at home scares me more than the medicine itself. I hope I can get over that, because it does seem that people who didn't do well on Remicade do much better on Humira.