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Posted: Sun Apr 12, 2009 10:29 am
by lunarrays
I wish I could have something positive to say about this drug, but my personal experience has not been positive. I had been in the study for nearly a year before deciding to get out. I don't know the dosage I was on but am positive i was on the actual drug. During the study I continued to experience worsening on symptoms as well as new symptoms. In addition, I felt like crap every single day...to the point where I could not tell what was MS and what was the FTY720 side effect. My doctor thinks that I may have been on the higher dose and that others who were on it were also complaining of side effects. There has been discussion that they may recommend that all patients be moved to the lower dose. Some people had side effects that were related to liver function and I had that problem in the first couple of months, tests showed 3x the max levels. At one point I was notified that my lymphocyte count dropped to 0.15 (0.80 is the low end of normal), and I can't imagine that is in anyway a good thing. I hope thins pans out for others, but I think it's no different than any other treatment...it all depends on what type of MS you have.
Posted: Mon Apr 13, 2009 6:06 am
by carolew
I know the feeling Lun but I had no side effects, just low lymphocytes...
One day we will laugh about this.... Carole
Posted: Mon Apr 13, 2009 6:07 am
by carolew
Smilingface, hang in there and you will make you own mind about this drug. You may be the lucky one that it really helps.
Carole.... keep in touch
New Trial FTY 720 PPMS
Posted: Sat Oct 03, 2009 8:16 am
by Astrid
Hi,
My name is Astrid and I am from The Netherlands.
My husband (Rob) is diagnosed with PPMS in August 2006.
Since January 2009 het is on the new FTY 720 trial for PPMS.
We are 41 en 45 years old, no kids, own business wich I run on my own now.
Rob is getting worse everyday and we think he has side-effects from the FTY (thinking because in this trail you are not sure if you are on the drugs or not).
His EDSS score is 5.0, he doesn't feel his feet or legs, arm and hands but stil can walk about 200-300 meters.
He cann't coordinate his right hand anymore and his left hand is getting worse. He always has tintling (is that the right word?) sensations all over his body and his legs and arms feel very heavy and painfull.
Het had to quit working 2 years ago and is very tired.
But... we still try to enjoy life and when it is possible we go to parties, out for dinner or to friends.
I'd like to know if there is anyone out ther who is on this new trial for PPMS.
How are you feeling?
Thanks and I hope to hear from you!
We try to continue oure life