I'll say that it's been making me incredibly nervous. hspenser, you were in the trial and I think you got info on being off it for a while and then starting back up. I called Biogen/Elan and the person was not super knowledgeable... I felt like she was reading the booklet to me, which I clearly have nearly memorized by now! ;-) But, I was hoping to get a re-cap on what you learned.
I'm still curious if it's really the Tysabri that is making me so well. I was a week after my 3rd infusion and my fevers were coming back, bathroom trips at least 15 times/day, lots of blood, pain, etc. A week after starting the Xifaxan and budesonide suppositories, I got "well"! Now I am off both of those and just on Tysabri. I am back to 8 bathroom trips a day, but still minimal blood/pain... no fevers. If I use a suppository, I only have 3 bathroom trips per day...
So... Part of me would LOVE to go off the Tysabri for a couple months and just try the Xifaxan and budesonide suppositories (they're compounded 3mg wax suppositories)... just to see what happens. What if I am taking Tysabri and it's NOT worth the risk? What if it's really the suppositories that are helping? (Most of my inflammation is in the lower 12" and especially the rectum.)
And, I was thinking my fistula might be closing, but I felt gas through there the other day for the first time in weeks/month. I can't help but wonder... was it the Xifaxan... BUT stopping Tysabri and risking losing it as an option is scary too!
Thanks for "listening" to my vent/ramble!
--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
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-yr-old girl