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Should I be afraid of Remicaid?

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Ulcerative Colitis
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Posted 9/1/2012 11:18 AM (GMT 0)
Hey everyone..... after getting toxic levels from Imuran, my dr. is suggesting remicaid as my next step. Im feeling totally against this drug for some reason. I cannot tolerate mesalamine at all, so all I can take right now is the cortz enemas and prednisone. Remicaid seems like a powerful drug for only occasional flares of ulc. proctitis.??? Any insight would be appreciated!
Posted 9/1/2012 11:57 AM (GMT 0)
It is a powerful drug but I don't think it's any more dangerous than what you are on right now. And sometimes the benefit outweighs the risk.

My experience with Remicade (and I have heard this a lot) is that it tends to work at first then it loses it's efectiveness. Many people have achieved solid remissions from it though. It's one of those things that you won't know unless you try.

If you are uncomfortable about Remicade, perhaps talk to your dr about Humira. Remicade is derived from a mouse protein and Humeria is made from human protein. Good luck.
Posted 9/1/2012 2:49 PM (GMT 0)
I took Remicade for almost 2 years and it never lost its effect. It was the best 2 years I had since I was diagnosed. I'd say go for it and try it. Get your life back.
Posted 9/1/2012 3:58 PM (GMT 0)
I am in a similar boat. Although my GI is saying "let's hold our breath" and see what happens with taper before going to Remicaide etc. He knows I hate the thought of those drugs. He did offer it as an option. Right now I'm weighing out the pros and cons to a few scenarios he laid out. I'm a little depressed about what options I have left. I too cannot take Mesalamine.
Posted 9/1/2012 5:28 PM (GMT 0)
The only fear I had was that it wouldn't work for me.

Unfortunately, that fear was justified.

After 5 infusions, it did zilch.

It does work for some people though so good luck to you.

Posted 9/1/2012 6:00 PM (GMT 0)
I'm afraid of it.
My body is super sensitive to all meds so I fear remicaide, for me, would end up causing me more problems with all the potential side effects. I don't think I'd ever be comfortable taking it.
Posted 9/1/2012 9:11 PM (GMT 0)
I would recommend it. I had absolutely no reactions or side-effects until my fourth infusion. That's when unfortunately I did have a reaction and had to stop and try something different... But those first three treatments went really smoothly and seemed to work well. I had no symptoms, no side-effects, never got sick, and I felt great. I even kind of looked forward to the infusions 'cus I could just read, play a game on my phone, take a nap, etc. Like Marianne said, you won't know until you try it. Then whether it works or not, you will at least be able to cross it of your list of things you've tried, which will give you more knowledge for what might work in the future.
Posted 9/1/2012 9:33 PM (GMT 0)
I hate to say it but I would worry about remicade. My fears are around the longer term side effects like possible increased risk of cancers etc. So many of the drugs that we use long term have no long term research outcomes applied to them. When it comes to those powerful immune suppressors, I get a bit scared.

That being said, I am not overly familiar with remicade not having had to make that choice yet. If I were you I would research the hell out of it and see if you can find a second opinion from a doc with research experience or experience using it often.
Posted 9/1/2012 11:48 PM (GMT 0)
I'd never use it, but I have a friend with fistulising Crohn's who does. She's not on a regular schedule, however...she uses it when she deems it's necessary.

Maybe that's something that could be done for UC since it does lose its effectiveness apparently.
q
Posted 9/2/2012 1:19 AM (GMT 0)
that would be cool Q
Posted 9/2/2012 1:27 AM (GMT 0)

quincy said...
I'd never use it, but I have a friend with fistulising Crohn's who does. She's not on a regular schedule, however...she uses it when she deems it's necessary.

Maybe that's something that could be done for UC since it does lose its effectiveness apparently.
q

I've never heard of that. You aren't supposed to start and stop Remicade and start again so on as your body will build up antibodies to it increasing your chance of a allergic reaction. At least that's how it was explained to me at the time I was on it.
Posted 9/2/2012 1:38 AM (GMT 0)
i think it helped my UC when i started it back in august 2011 but i can't be positive since i was on 7 other UC meds, too. i had 5 infusions but it stopped working. my doc wanted to double the dosage at the time but i had a lot of joint pains on it. i couldn't imagine not being able to use my hands, elbows, or ankles- they would freeze up a lot.

but i am seeing a new gastro right now and she wants to restart remicade. she said it's unlikely that i've build up antibodies since stopping it in january 2012. i disagree since january was 6 months ago. she said i would get benedryl and prednisone with it even though i absolutely cannot take prednisone ever again. so this scenario will never happen.
Posted 9/2/2012 2:04 AM (GMT 0)
I'm at that stage where my doc is pushing it. Even had the medical company phone me to start infusion. Obviously, I was pissed.

I've refused and will continue to do so. I've been on Imuran. I'm not going on anything stronger. Rather have it cut out.
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