I am seriously considering this trial for the long open label part. I would have to end my rectal budesonide, which will cause me to plummet quickly downhill. I can totally relate to what you are saying... Then if I get low dose or placebo... It's like you said about having to make it 6 weeks. I am eligible in a couple weeks. I don't want to get worse again, but I can't stay on steroids forever.
Just wanted to give a virtual hug and say hang in there. Will they let you increase your steroids? Probably not. You are probably on a scheduled taper for the trial... It's so very frustrating to be in a trial hoping for the best and realizing you are not being helped.
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08 => STOPPED 10/3/08 - now 2 months into it & it was the right decision
--currently taking budesonide suppositories, 3mg at night. Doing well with this so far.
--single mom to 11-yr-old girl