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Remicade is not working anymore

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Ulcerative Colitis
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Posted 6/12/2012 12:07 PM (GMT 0)
Long story short.  Almost a year on remicade.  Started having some weird side effects a few weeks before my infusion was due.    Sick to my stomach, abdominal pain some blood and mucus.  Had my infusion on Friday.  I was really hoping to wake up Saturday feeling like a new person.  My pain in my stomach is worse and pass gas with blood going all over my bathroom floor.  Called my GI, going in today.  The weird thing is, I am not going to the bathroom a lot as, a matter of fact, I literally have to strain to push anything out, but blood the blood and mucus.  I have never had to strain going to the bathroom.  Anyone ever have this happen?
Posted 6/12/2012 12:14 PM (GMT 0)
How frequent are your infusions? Because when I had mine every 8 weeks, I started having symptoms two weeks before my next infusion was due. I talked to my GI about it and we did the infusions every 6 weeks. I didn't have symptoms anymore after this.

I hope Remicade still works for you.
Posted 6/12/2012 1:18 PM (GMT 0)
My infusions are every 8 weeks. Do you think it is going to take a few days and the remicade will start working? That is what I am hoping. Since I just had the infusion, do you think they will put me on something else to stop the flare for now? I see you are not taking the remicade anymore. Did it stop working for you?
Posted 6/12/2012 1:58 PM (GMT 0)
I was on Remicade for a year. It never actually even worked from the get go but I stayed on it because I kept hoping it would finally "kick in". I had similar straining episodes like you are describing throughout my battle with UC. And the end result was always a bowl full of blood but no poop. Remicade was the end of the road for me. I had jpouch surgery after that. (best thing I ever could have done...wish I did it sooner) But I had tried just about everything else and I had to do something because I was getting sicker and sicker. Hopefully your appt. with your GI will shed some light on whats going on. Best wishes.
Posted 6/12/2012 3:05 PM (GMT 0)
I've had 3 treatments of Remicade, the first one, then 2 weeks later a second dose and 6 weeks after that a third dose. I was reluctant to go on the medicine, but it worked wonders for me. My BMs were just about back how I was pre-colitis.

But, at 5 weeks and 5 days after the last dose, I started having problems. I actually had to go back on prednisone (Boo Hiss).

I go in tomorrow for my next infusion, it will be interesting to see what the plan is. More medicine or treatments more often.
Posted 6/14/2012 1:59 AM (GMT 0)
Kim, how are you doing now?

I stopped Remicade because I moved from Germany to the US and I didn't have health insurance the first few months so I missed my next infusions. It never stopped working while I was on it. I had it for like 2 years.

I hope you're feeling better.
Posted 6/14/2012 2:37 AM (GMT 0)
I have heard of a lot of people building up antibodies to Remicade. Sometimes people take 6mp with Remicade it prevent this from happening but it can happen regardless. Hopeflly this is not the case for you, you may just have a stomach bug or something going on that is causing your symptoms. I believe there is a blood test the GI can run to check for this. I think I'd give it a few days to see if you feel better, if not, call yoru GI and inquire about the test.
Posted 6/14/2012 12:48 PM (GMT 0)
I believe that for some of us, our bodies just don't want to cooperate. That our bodies become used to medications or build up antibodies. I'm one of those people too - I have such a strange system. That is why I have to be on 6mp AND Remicade together to help prevent antibodies. Are you still on the Imuran with the Remi? I sincerely hope that you are not becoming intolerant or building antibodies against Remi :( Some people get lucky with their Uc and can manage it with only a 5-ASA - I get so envious of those people!

Did you go in to see the doc? If so, what did he say?
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