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?