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Remicade Question

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Ulcerative Colitis
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Posted 4/1/2016 10:23 AM (GMT 0)
So I have had 5 remicade infusions so far. 3 Initial and 2 following. The last 2 I did after 8 weeks and then I went back after 4 weeks. The last 2 doses were also 10mg. I am also currently tapering off prednisone (on 5mg). Prednisone doesn't really work for me like it did years ago because I've been on it to frequently but normally does the trick to keep me comfortable.

My question is, when you are on the remicade (I know it's not a cure), I'm only going to the bathroom 1-2 times a day (no blood really that I can see) but after I go to the bathroom and a lot of stool comes out, sometimes I'll go back to the bathroom 2 hours later and a grainy like material comes out with a tint of red looks like mucus. Is this normal or does it mean remicade isn't working? Do people still experience this while on the remicade?

Also, should I be seeing better results from the remicade? Or should I take a hint and say it's not working?
Posted 4/1/2016 1:27 PM (GMT 0)
It's hard to tell how well Remicade is working for you because I don't know what your symptoms were before you started Remicade. I'm assuming they were worse than they are now. If so, Remicade is clearly doing something, even if it hasn't put you into 100% remission (yet). Rectal inflammation is usually the hardest to treat and the last to go, so maybe there's a bit of lingering rectal inflammation.

Personally I would have killed for those results on Remicade. But if it does bother you (and I'm not intending to guilt-trip you; hope it doesn't sound that way), maybe you need to do a quincy and bung in some rectal meds for a few weeks. Or just wait, as 5 infusions isn't that many and there's still time for Remicade to make further improvements.
Posted 4/1/2016 2:15 PM (GMT 0)
Agreed, hard to say without knowing your before and after remicade symptoms. 1-2 bms a day is most certainly excellent though. Maybe giving it another few infusions will clearup the extra bowel movement and remove the crumbs. I had those too as I was nearing remission. They went away in time.
Posted 4/1/2016 3:35 PM (GMT 0)
That sounds like mucus too me. But 1-2 bowel movements a day is awesome! (I am going to assume you were more before.) I am still at 4-6 after 9 months on remicade and I would definitely say it worked with me. (over 20 before...)

I have to wonder too since you are tapering the pred now, if that is the real reason why you are still seeing some blood tinged mucous. I don't think you can fully judge if it is working until you are completely off the pred.
Posted 4/1/2016 4:47 PM (GMT 0)
I would notice the week before my next infusion that symptoms would start to come back and I knew it was time for my next dose. Don't get me wrong Remicade was the best UC Med for me out of all of them but I wouldn't say that I was in complete remission like I was with 6-mp. When I was on 6-mp I was very tired from it.
Posted 4/2/2016 5:22 PM (GMT 0)
Too soon to tell- stay the course.
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