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Remicade..When Did it stop working for you?

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Ulcerative Colitis
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SGRUBB
Regular Member
Joined : Jun 2007
Posts : 67
Posted 8/25/2007 6:59 AM (GMT -6)
Hi everyone! I have not posted on here in a while. Been on vacation here and there...anyway. I am on Remicade as one of my drugs for treatment and I get my next dose at the end of September. I now get my doses every 8 weeks. I believe I am starting to have a flare again.....just got off the prednisone about 2 weeks ago and well, I just feel the changes. I'm seeing the usual mucus, etc. I guess what I wonder is how many have had experience where the Remicade doesn't work for you and how long was it before you knew that it didn't work? I am just thinking what is the point of going in to have the infusion at the end of September when it may not be working for me?

Any information would be a great help.

Thanks so much!

 

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Eva Lou
Veteran Member
Joined : Sep 2006
Posts : 3444
Posted 8/25/2007 7:24 AM (GMT -6)

hi there- while Remicade hasn't "stopped" working for me, per se, it's lost a LOT of it's effectiveness. I've had 4 infusions, & after the 3rd one I started to flare 3 weeks after I got the drug. So I went on cipro, & upped my Imuran dose. I held out 'til my 4th infusion, which was last week. And I wouldn't say I'm in remission now at all, I still have bad urgencies & anywhere from 6-10 bm's a day. I dunno.... Right now I'm at the "contemplating surgery" step... my GI doc recommended I go for this most recent dose of Remicade, & see how I responded to it. We both felt that my reaction would sort of indicate which direction I was going in, if the Remicade would work or not. But he also suggested I go for a surgery consult, so... He did mention Humira, we may try that. Although at this point it seems like I'm delaying the inevitable. I keep thinking though of how awesome those first infusions were! I felt great! I get infusions every 8 weeks, & have not yet scheduled another one. I don't know if I will- I'm going to see how long I get relief from the most recent dose, then go from there. If I start to flare again in like a week, I'll probably go back on steroids & call the surgeon. Sucks.

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SGRUBB
Regular Member
Joined : Jun 2007
Posts : 67
Posted 8/25/2007 12:56 PM (GMT -6)
Thanks for your reply. I have had UC for well, over 20 years. I would say that I am doing 4 bm's per day is ok but I still have that urgency as well. I'm scared to death to even go to far in the car. You know the drill.

Lately I have such anxiety about going anywhere without knowing there is a restroom nearby. I also have two small children....trying to get a 4 year old and a 2 year old to HURRY UP to the bathroom is sometimes impossible! LOL! It's not funny but you know, they just don't understand at this point.

I am ready to go the route to surgery as well because I'm just tired of living my life like this. I felt great when I first started remicade too...now who knows what will happen.

 

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