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follow up on FTY720
Posted: Thu Aug 28, 2008 5:16 pm
by carolew
Had my follow up today. They now warn you not to get any live vaccines and give you the results of certain susceptibilities that you may have, using old blood work. This is all because of the recent infections and the death that has occurred on this med. My EDSS has come up so I had to sign a form saying that I still want to be in this study. I actually thought that my walking was better but the barometric pressure here is falling and I always get slightly worse then. This will appear in the statistics but I can't help it.. will keep you posted. Carole
Re: follow up on FTY720
Posted: Thu Aug 28, 2008 5:48 pm
by Lyon
..
Posted: Fri Aug 29, 2008 3:41 pm
by flipflopper
Carole,
I was really hoping that you would do very well on Fingolimod (assuming you are not on a placebo). Like Bob, I hope the EDSS increase is minor (it does sound like it is a minor increase from what you wrote).
I wish you all the best!
FF
Posted: Sat Aug 30, 2008 7:10 am
by carolew
I actually think I am slightly better but I have had an intense week with less sleep so my walk test was not as good. I have only one more visit then I start the extension arm of the study.
I also think that the EDSS score is a poor reflector of our real state of health since it gives too much importance to mobility.
Will keep you posted. Funny, when they start the extension, you have to stay under observation for 8 hrs again. It will be a nice day of reading for me. It will be a forced day off. That's good.
thanks, carole