carolew,
from memory, you were doing well on statins, and quit them to enter the fty-720 study? When I spoke to a neuro running an FTY720 study, he said I could continue with my lipitor. Have you gone back?
FTY720
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CureOrBust
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Dear Cure
Oh yes I did take it again but the effect is not as good. It's as though damage was done during the month that I was off. I can't stop this medication. If I miss one day, my left leg becomes ssoosoo spastic. I still need it but it is not enough anymore. I should have staid on it the whole time. How are you doing? carole
Oh yes I did take it again but the effect is not as good. It's as though damage was done during the month that I was off. I can't stop this medication. If I miss one day, my left leg becomes ssoosoo spastic. I still need it but it is not enough anymore. I should have staid on it the whole time. How are you doing? carole
Hi carolew!
Question: did you had fall backs/relapses in those 6 months?
I don't think your 6 month period was in vain because the researchers get precious material to compare. Also they should give you steroids (prednisolone) if you do get a relapse. It's something I insisted upon. That should keep you out of the danger-zone.
Personally I'd like to thank you for providing the (placebo) data. It will give all of us a chance to use FTY720 in the future. The FDA has to approve it...
I am now roughly 3 months on FTY720 and I don't feel any side effect anymore but I've remained relapse free and I hope it'll stay that way! The moment I hit 7-8 months and if I did not have any relapse, then FTY, for me, is a success since I usually get a relapse every 6 months.
J.
Question: did you had fall backs/relapses in those 6 months?
I don't think your 6 month period was in vain because the researchers get precious material to compare. Also they should give you steroids (prednisolone) if you do get a relapse. It's something I insisted upon. That should keep you out of the danger-zone.
Personally I'd like to thank you for providing the (placebo) data. It will give all of us a chance to use FTY720 in the future. The FDA has to approve it...
I am now roughly 3 months on FTY720 and I don't feel any side effect anymore but I've remained relapse free and I hope it'll stay that way! The moment I hit 7-8 months and if I did not have any relapse, then FTY, for me, is a success since I usually get a relapse every 6 months.
J.
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CureOrBust
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just found this PDF, haven't read it, but it may help satisfy some peoples search for info on it.
NIBR03_Feature_exerpt.pdf
NIBR03_Feature_exerpt.pdf
Hey LeoDaV,
I just saw your post despite the fact that I check this site everyday. I am confused.
Anyway, I have been on this study since Dec'06. No relapses but not doing that great despite intense physio. My EDSS score is not changing But I know that my walking is more difficult.
I used to get attacks every 10 years, than it was 3 years, then I think I became SPMS which means no more attacks but just deterioration slowly. I surely didn't need the steroids but I know I want the real thing i.e.FTY 720 because it really seems to be effective.
I never had any side effects. I wish I did.
I will persist because there is nothing else given orally to date.
So keep making music Leo and take care all. Carole
I just saw your post despite the fact that I check this site everyday. I am confused.
Anyway, I have been on this study since Dec'06. No relapses but not doing that great despite intense physio. My EDSS score is not changing But I know that my walking is more difficult.
I used to get attacks every 10 years, than it was 3 years, then I think I became SPMS which means no more attacks but just deterioration slowly. I surely didn't need the steroids but I know I want the real thing i.e.FTY 720 because it really seems to be effective.
I never had any side effects. I wish I did.
I will persist because there is nothing else given orally to date.
So keep making music Leo and take care all. Carole
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CureOrBust
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- Location: Sydney, Australia
Just Started Trial
Just started FTY720 trial this week and from what I can tell, I think it's the real stuff. BP rate way up, difficulty breathing at times, minor chest pain (very minor actually). My heartrate though did not go down the first dose. mine actually bounced up and down with some major swing ranges.
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thinkingoutloud86
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Don't know if this is new or not, but I found it in the midst of an article...
Novartis completes agreement with Bayer Schering related to Betaseron rights and manufacturing
"...a once-daily oral therapy FTY720 (fingolimod), which is currently in Phase III trials. Novartis expects to submit FTY720 for US and EU approvals in 2009."
http://www.thisisms.com/ftopic-reply-2929.html
Novartis completes agreement with Bayer Schering related to Betaseron rights and manufacturing
"...a once-daily oral therapy FTY720 (fingolimod), which is currently in Phase III trials. Novartis expects to submit FTY720 for US and EU approvals in 2009."
http://www.thisisms.com/ftopic-reply-2929.html