helo with a decision about prednisone

for the past 3 months i have been in a middle of a flair, my remicade stopped working. my GI has decided to up me to 10mg/kg and redo the induction doses. so for 3 months i have been on 40mg of prednisone and soon itll be time to come off. im haveing my 2 week infusion on tuesday then i have one 6 weeks after that. my problem is that the GI said i can start to come down on the pred when i feel like i am ready. ok i am SO ready i HATE it. i am having such bad side effects its driving me crazy! id stop today if i didnt have to taper down so slowly. buuuuuuuuuttt.........im not sure when is going to be the right time. they siad if i want to be safe i can wait until the 6 week infusion and see of all my symptoms clear up by then.

heres where i stand now. i dont have much pain ( but im on pain meds so i dont count that really) and the pred has slowed me down incredibly. sometimes i actually go once a day. but when i do go it is always diarreah and is never formed at all. and like when i was first diagnosed when i got to the BR it is awful. i get dizzy and nauseas and i feel like i am going to be sick. and althought i can eat more foods now without trouble there are still times when i have the urgency and have to go as soon as i eat something bad and ill have a few days where im all screwed up again.

so what im wondering is when should i wait until. i know for a fact that the pred is what is helping, as much as i hate it and i dont know how ill be able to tell that it is the remicade taking over. so you think i should wait until my symptoms dissappear sompletely before i try to taper off? or will it just not be that way and ill always have symptioms? prior to this flare i was in remission for a year so i just dont know how much of the symptioms to accept as feeling better. does tha tmake sense?

i know this is a long and confused post but i am confused:) what would you do if you were me. when would you start to taper off?

bunny

Hi Bunny When I was on 40 I didnn't get the D and that's with Rem I also went the low roughage diet.I am having to come off the pred. because my glucose went up so I reduce one half tab a week ,yesterday I spent the day running to bathroom all day at 7mgs .I do this since lowering my pred. and then I"ll have it upped and so on.I am having alot of air passing which is good because I have alot of gurgling in there. For me I am just going to keep reducing .You will have to think about how you are feeling and I am not sure if you should wait until you get your other Rem. treatments or not have you been on it before with the Rem? I am like you wondering how it will go after the pred. is gone.I guess I will have to see and go from there.I will say that 20 helps me alot with not as many sideffects. lol gail

thanks for the replies. i think i am going to stay on it for another week, get one more remicade into me and then ill start to wean down. i usually have to go 5mg r 2.5 mg a week becasue it gives me severe problems. im just ready to be off of it. and i guess i wont know if the cade is working if i dont try anyhow.
thanks again :)

bunny