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Remicade HELP !

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Ulcerative Colitis
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Posted 6/8/2014 4:20 PM (GMT 0)
So... Here is my deal... I'm allergic to mesalamine, so that's out the window... therefore, I was put on 100mg of Imuran, which kept me in remission for about a year, then in which I got a bad flare recedntly do to stress I believe and a hospital visit with Hypokalemia (unrelated to UC) in which they put me on high doses of potassium and magnesium that made me flare and bleed like crazy.

With that, I just hated being on Imuran, I got rashes and felt very ill all of the time. My GI said it's probably good to come off the Imuran and try Remicade. However, I'm terrified. With hating Imuran and the side effects so much, won't remicade do the same?

What do you all think? I want this flare under control for sure, lots of bleeding. But just wish I could be med free, or at least get it under control with predisone and hydrocortisone short term.

I'd love to hear your thoughts and side effect experiences from remicade, is it as bad as imuran? Is there anything else I can try?

I hope you are all well.

Much love
Posted 6/8/2014 6:19 PM (GMT 0)
I think people tend to have more adverse reactions to imuran compared to Remicade but I can't give a personal opinion because I haven't been on either medication. I am on 6mp which is like imuran, usually people have similar side effects from 6mp as imuran. I think we all wish we could be med free. The problem with cortisone is that it is a band-aid, things are good while you're on it and when you try to stop, often, symptoms come back quickly. I am sure there are people who have had other results with cortisone but mine fall into the category of needing something to maintain the remission. Prednisone got me there quickly but as I tapered, I got worse and worse. Luckily 6mp has worked well for me.
Posted 6/9/2014 3:08 AM (GMT 0)
Am taking Imuran 50mg was taking more but felt sick all the time. Doc put me down to 50mg and Remicade. Was terrified to start it. But I saw my last scope while in the hospital getting 3 blood transfusions for loss of blood. My bowel has never been this bad so have started Remicade. Have had the 3 loading doses and start every 8 weeks in july. So far so good. Am off the prednisone. Imuran and Remicade are in two different classifications. Do your research but only go to reputable websites. There is too much unreliable information about Remicade out there. I have so far not experienced anything bad, but then again I just started. Read posts here you will find many comforting posts. I helped me make my decision it was Remicade or surgery. Like I said so far so good. Good Luck
Posted 6/9/2014 3:25 AM (GMT 0)
Remicade is a great drug. So many people get help from it.
And statistically it has much less side effects.

And when you are on it... you feel like you are med free. Eventually you only get infusions every 8 weeks. Every other month! Not popping pills every day :)

It's a great drug to try. And the side effects are minimal. The "big scary" ones are soooooo not likely. But they have to put them on there if it happened to even one person.

There are so many success stories. I am not one of them... but I was so afraid to try biologics. I am really glad that I gave Remicade a shot! :)
Posted 6/9/2014 3:59 AM (GMT 0)
Was on 6mp (mercaptopurine - similar to imuran) and was so very sick for a month - rash/hives, fever). They didn't know if it was allergy, infection (got minor bout of viral meningitis), or both. Finally determined it was just plain bad for me and stopped cold turkey. No taper required.
Good luck!
Posted 6/9/2014 11:34 AM (GMT 0)
i've now had 2 infusions of remicade. i was hospitalized for a month (just got out last week) and got my first infusion as an inpatient, second at medical daycare. remicade is definitely helping me get out of this flare and i'm very thankful. i still have symptoms and cannot go back to normal life yet, but am slowly improving. however i am experiencing side effects, though am not positive if they are coming from the prednisone (which i am tapering off slowly) or the remicade...hard to say. i think the body/muscle aches are coming from remicade, but again, not totally positive! i try to think of remicade as what my doctor called it--a "rescue drug," something that's needed and used at a specific and necessary time when surgery seems to be the only other option. this is where i was when i said yes to remicade, otherwise i don't think i would have tried it due to all of the scary long & short term side effects. i'm hoping that when this flare calms down i can try to manage the colitis without remicade, and take a more holistic route as it aligns with my values. i know people will disagree with this decision and tell me to stay on remicade, but that is ok, to each her own :).

good luck and let us know what happens!
Posted 6/9/2014 1:22 PM (GMT 0)
I flat-out flared constantly for the first five years after diagnosis (Remi was not yet approved for UC, so my insurance would not cover it.) I had no days with less than 10 stools with blood and mucus, plus a lot of pain and extreme exhaustion. I held out because I knew Remi was in the pipeline.

I started on Remicade in March 2006. I was going into remission after the second dose, and well enough to be happy after the third. I did continue to heal and improve for a year, and have now been in remission for 8 years with Remicade. I still take Balsalazide due to a family history of colon cancer, but my scopes have been completely normal except for scarring for the past 5 years.
Posted 6/9/2014 5:30 PM (GMT 0)
All these responses are so helpful! Remicade seems like it's a great drug for us Flaring UC victims. I'm just still scared that I will feel that unwell feeling I did from Imuran. But seems like that's not the case with remicade?
Posted 6/9/2014 6:10 PM (GMT 0)
The main thing is that they are two rather different drugs that work in different ways and are metabolized by your system in different ways. Unpleasant feeling form one is not predictive of how yo will feel taking another. So reason enough to be hopeful.
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