I've been off of it for 3 months now so I don't know about longer use and major headaches. The headaches I had while on it for the 6 months were not that severe and they came the day after my infusion. Are they always that severe or could it be the influence of the flu virus?
Hope you get some answers and relief!!
--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