OK, I just got back a short while ago from the hospital. After my scope last week showed big improvement, I have now been placed into the second stage of the trial (maintainence).
I was randomised again.....and I am almost certain that this time I am in the PLACEBO group!!!
Oh no!!!!!!!!!!!! I was really hoping and praying this wouldn't happen.
I had my infusion, and I just dont feel the same as I have done after my previous ones...I know this could all be in my head. But, something just happened about 30 minutes ago that pretty much confirmed I have just had a placebo infusion - I HAD A BM !!!!!
I NEVER have a BM after an infusion. Even on Remicade days, I never did. So, now I am waiting to flare :-( Terrible situation to be in. But, all I can do is keep a close eye on my BMs and check extra carefully for blood. If things start to worsen, I will call the hospital and ask to be put onto open-label. But, I think they will make me go through yet another sigmoidoscopy first...sigh..
I will keep you all informed !
Abatacept Trial since Feb 2008 (Induction Period)
Back on Pred - 3mg - Steroid Dependent :-(
Actonel 35mg, EPA Fish Oils
Predfoam Enema - Had to stop as not allowed during trial
Asacol x 9, Lialda (Mezavant)
Remicade every 8 weeks (Stopped working)
Aloe Vera Lily of the Desert Juice Gave me the worst D !
Primadophilus Reuteri Probiotic