Hello all, I have been on remicade since december and I just had a double dose on the 28th of march, almost 3 weeks ago and even a day after the dose I did not feel my usual self that I feel after remicade infusions. I'm scared remi has run its course. I've been on pred since last october and have been tapering really really slowly, whenever I feel my body has adjusted, being more than one week on each dose or more (don't even reduce on my period). I cannot afford to up my dose of pred but since 10mg all my symptoms have come back, that being mostly a lot of blood per BM, urgency, but with pysylim seed powder I can hold out to about
3-5 times a day. I don't feel like I'm a lost cause, but I feel I have given remicade the time to work and it has worn off. I think I will do one more double dose then look for the next medication. I am also scared I am running out of options as I am only 19 and my knee has gotten worse (always had a problem but worse now...). I think it's come to the point where I have to get off pred no matter what, I've already had really bad insomnia, bad acne, and gained 20 pounds. My docs solution is always going up on pred but I just feel its not going to be a solution this time and I don't want to agree to that. I know I'm not a serious cause but I have gotten my iron up to 113 and just don't want it to go down anymore. I don't want to go back to not being able to see my friends, having anxiety, not being able to work like a normal person, not being able to go places, or go to college without all these problems. I start college in sept and just don't see how I will make it through and even if I do, I will be struggling a lot.
I have tried asacol,pred, enemas, supps, aza gave me a really bad stomach ache, remicade, I guess humira is next? I eat gluten free and lactose free, so a diet change cannot really be a solution since I already have a restricted diet.
Post Edited (michys-mom) : 4/16/2016 8:47:35 PM (GMT-6)