Remicade Concerns

Hi everyone,

I had my third infusion last week. I definitely feel much better, less urgency, way less blood, however I have almost no formed stools. After my first infusion, I felt a lot better, almost perfect, but I was also on pred. After my second infusion, we tapered off pred, and since then, it seems like I took a few steps backwards. I know it takes time to heal, but most of what I see on here is people with blood and no d, so I was wondering why it's opposite for me. There is blood in there occasionally, but most often not. I'd say about 80% d though. And to add insult to injury yesterday I was told I have tonsilitis and strep, and put on penicillin which does not seem to be helping my stomach very much. Just wondering if anyone had similar issues and if this is normal or not.

Thanks everyone.

I went off steroids before I started the Remi, but that was due to some really serious side effects. I felt better after the second infusion and was in what I think of as "relative remission." (3-5 times a day vs. 20-25, minimal bleeding, no mucus, but still severe urgency) I gradually got better over the next six months until I was in a real, solid remission. It isn't always like flipping a switch.

It is normal to take awhile to feel better. Might even have to adjust dosing or frequency. Don't despair! DO they have you on dual therapy (with 6mp?). Seems the combo is proving to be the best therapy as new research gets logged--might want to just ask at your next appointment.

Katmom- I am on 6-mp as well as Lialda and obviously the Remicade. I was feeling much better before I got on the penicillin. My doc also took me off 6-mp temporarily while I have strep.

I got uc - Good luck! I was very nervous before my first infusion, but it really did make me feel better. Sometimes it's just confusing seeing as some people say Remicade will instantly help, and others say it takes a while. Everyone is different. I have absolutely noticed a difference post-remi as compared to pre-remi, so although I am certainly not in a full remission, I will definitely stick with it for a while longer and see how it goes.

Thanks everyone for the replies.

Im one infusion in for Remicade.
6 days.
I noticed changes immediately.
But nothing too crazy yet. Just a decrease in frequency.

I am still all D.
I had almost soft little pellets/puck-like poops yesterday... and they didnt break up too bad when I flushed. But D right before and right after.

I am looking forward to my second dose to see what kind of changes I get next.

A couple people I talked to had instant relief of some symptoms... within days, almost over night.

I was hoping to be just as lucky... but it will just have to take us some time :)

I take Simponi, and needed to go back on Uceris to finish the lingering diarrhea, which stopped it fairly quick and then put me into close to 100% symptomatic remission.

It seems to be common to have to use (or stay for a while on) steroids while starting biolgics to help get into remission, then rely solely on biologics (and whatever else) to keep you in it.

You may have gotten off them too soon....plus that PCN isn't helping at all I'm sure.

I think it was the Penicillin behind my gut ache today is second day off and a noticeable difference while still some ache the severe ache is gone. Frequency is up and all D, but in the scheme of things at this point I will take it over a 8 or 9 on the 10 scale gut ache that only 500mg hydro would take the edge off.