I understand too. I was hoping for that
open-label. I had to move to Tysabri after Prochymal too. It is scary, but keep in mind that trying it is very, very low risk. If it works, then you can decide how you feel about
the risk. And, if it works, the risk is easier to accept. Like you said, there is only so much a person can live with and if there is a chance that Tysabri could hold you until the stem cells come around, it's a valid option! So many thousands have taken it safely. And, now there is another med that's showing PML risk. It's tough to know how many of the immune modulators have the potential and we just don't know it yet. (Raptiva - a psoriasis med announced today) I could never get off the steroids while on Tysabri (for 6 months, 7 infusions total) so I stopped it.
northernguy - have you tried Cimzia yet? I still don't know for sure how much it's helping as I am still not off the steroids, but I'm better than I was by enough to keep it up.
--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. SLIPPING big time. Started Cimzia first dose 2/10/09. cipro/flagyl cocktail 3/25/09 Dx Osteoporosis 10/08 started Forteo 1/27/09
--single mom to 11-yr-old girl