Eva Lou - Yes, I discussed the issue of urgency with my GI and he said its usually the last thing to go when coming out of a flare and I should just hang in there. Also, we are not allowed rectal meds in the trial and I dont think helps either!
The trial is for 2 years and I am now 4 months in. The final 12 months are open-label and hopefully participants continue to receive the drug until it receives a license. Yes, scopes are quite regular - I have had 3 already. Each showed improvement, which I was really glad about.
Severin - I am glad you mentioned fatigue was also an issue for you, as I starting to think something was wrong with just me! You are right, it comes and goes. Some times I have to go to bed at 9pm and other times I am wide awake at 1am. Did you ever find you were walking out and about and suddenly it hit you? It's like oh my god, if I dont sit down somewhere right this second I may just collapse? UC has always made me really tired but it was never like this..
Abatacept Trial since Feb 2008 (Maintenance 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