Remicade - OK I want to know everything

Hi there all the way from New Zealand - and the Ulcerative Colitis section of Healing Well.......Im hoping all you Remicade users can help me out.....I have tried Aza and 6MP for my UC and it seemed to have topped working after around 6 months each time....NZ are trialing Remicade and I have been asked to take part ...but I would really like to know what the real users think of it ...Any feedback would be greatly appreciated.

Thanks in advance

Was an absolute life-saver for me, I was facing an ostomy bag and had really bad arthritis. Then my hospital got this new drug, I was one of the first few patients to receive it and so it was an eleventh hour thing for me - they gave me one dose of it to see what happened and it was amazing. The next day my visible inflammation had gone, we couldn't believe how quick it worked for me, literally within about a week I felt absolutely fine, my bloodtests were normal. Back then as it was so new they only gave it to you when your symptoms returned - it kept me symptom free in remission (maintained by weekly methotrexate) for 2 years, so I had another and it kept me in remission for 3 years, then the next one I was in remission for 6 months and after that I had to have another two 8 weeks apart to get rid of symptoms and blood results to normal, but on that occasion I had become severely ill very quickly and I wasn't able to be treated right away so that might have been why it took two doses. I find that after the infusions I get side-effects lasting about 2 weeks but that could be because I'm an episodic user, I go a bit manic and have insomnia and agitation but its a small price to pay in my view. Its been 10 weeks since my last one and I'm doing fantastic still and fingers crossed it lasts this time, I really hate to imagine where I'd be now if it weren't for this drug, I just hope it continues to work this well for me!  

I have also had good results with Remicade. 2 + years now, and its still doing the job. I had immediate relief after my 1st dose. I would give it a go! Good luck.

Ive Have had my first 3 infusions so far. It is working great for me. I have a massive acne break out and minor rashes on my arms when I shower BUT I am picking my battles and they dont stand a chance against remission...lol     I think its a small price to pay for happiness. I just hope it works for years and years             Good luck

If you click on the "new meds" link in my signature you'll find a lot of good threads where we've discussed Infliximab / Remicade.

Good luck with your decision! Before you commit to the trial, I would ask the people running it whether you'll be able to keep taking the medication once the trial is over. A delay of more than four months between infusions increases the risk of you having a nasty reaction the next time you receive Infliximab, and you may be unable to take the drug again.

In other words, if you are only going to be getting the drug for the duration of the trial, I would be reluctant to participate. Infliximab has been the magic bullet for many, many patients. You don't want to lose the chance to have a sustained remission, simply because nobody will give you the drug once the trial is over.

Ivy.

Thanks so much everyone..keep the comments coming in .....