anyone here taking remicade? - Bowel Disorders Message Board

hazeman71 · 10-09-2006, 09:33 PM

I'm 35 and was diagnosed with crohn's about a year ago.I've been on Remicade for about 6 months and am not sure if the risks outway the benifits.is anyone else here taking it ? if so how's it working for you?

gardenandcats · 10-09-2006, 09:49 PM

In 2004 I had one infusion it went fine and I did feel better. i had my 2nd infusion 6 weeks later.This time I had some reaction trouble breathing for a few hours and a slight rash.Again I did continue to feel better.Another 6 weeks 3rd infusion and was given bedadrly and something else as the 2nd time I had minor problems. Half way through the infusion the breathing problem hit hard and severe. Flushing .blood pressure went sky high. They had to stop it gave me a bunch of meds and on oxygen and a over night stay in the hospital. So I can not have it again. It did seem to be helping. And if I had not of had the severe reaction I would of continued as long as I was seeing benifits. I know quite a few who do get Remicade and see a big improvement. This is the big gun. And if other meds help then I would try them first.

hazeman71 · 10-10-2006, 10:57 AM

I just had my sixth infusion yesterday. I haven't had any sort of reaction to it I just don't feel a whole lot different after taking it.and with it being a biological med.who knows what long term effect it may have?

gardenandcats · 10-11-2006, 08:35 PM

The long term effects down the road from this drug is a unknown it hasn't been used long enough yet to see what happens to those who take it for a extended period of time.So that is a big concern I do agree. What other meds did you take before the Remicade? If your not really feeling much better then you have to weight the pros and cons and decide if you want to continue it. As each of us are different as to what meds are helping the Crohns and what meds don't. Plus what symptoms we are having its a individual decision we all have to make. I started on Imuran after the Remicade was tried and I have been doing better with the Crohns then I ever have and I have had it since the early 60s.

runaway0202 · 10-12-2006, 02:04 PM

I have been receiving Remicade infusions every nine weeks since 1999 (I believe or 2000). Matter of fact I am going tomorrow! I have not had a flare since then. In 2005, I was diagnosed with Anal Cancer, and noone can tell me if it was related to Crohn's or an effect from the Remicade. With Crohn's disease you are more at risk for developing some kind of GI tract cancer, and with the Remicade it has been noted that some were diagnosed with Lymphoma. So who knows.

Everyone is different and some can tolerate Remicade with no side effects and some, like myself, get the extreme! Other than the cancer, I have not had any real side effects during or after the infusion.

Hope that helped!