Apr 6, 2010 (Started Aug 20, 2007)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    Mild (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 1 Daily
Advice & Tips: I have been on this treatment, which is now being evaluated by the FDA under Fast Track status, for 2.5 years. My MS has been in total remission since the first dose. The trial was unblinded in January and that's when I found out I have been on the .5mg dose all along. I have recently been told that my liver enzymes are slightly elevated and we are monitoring them, but not high enough to mandate stopping treatment. Fingolimod (a.k.a. FTY720) now known as Gilenia, has given me back my life -- and my will to live it! Sounds corny and dramatic, but nonetheless, it's still true.
Cost: < $25 monthly

Dec 22, 2008 (Started Aug 20, 2007)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 1 Daily
Advice & Tips: This medication, when approved by the FDA, will be the first ever pill form of a disease modifying drug for MS. The capsule is tiny and you don't even notice when you swallow it. It's 1/3 the size of my daily vitamin. It has given me back my life. I have not relapsed in 22 months now, where before the study, I was relapsing every 3 months. My EDSS has improved and I no longer have to take any meds to manage any symptoms (for spasticity, fatigue or depression). While all meds have side effects, I have been fortunate enough to be taking this with minimal negative effects. The most negative thing I can say is that I had an increase in head colds and UTIs for the first 6 months, but none since. I hope to stay on it once the study is over.
Cost: < $25 monthly

Sep 14, 2008 (Started Aug 20, 2007)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 1 Daily
Advice & Tips: This medication is sure to hit the market and when it does I hope all MSers experience the dramatic reduction in relapses that I have enjoyed. I have gone from relapsing every 3 months to being 17 months relapse free now. I am entering the extension phase tomorrow (Sept. 15th.2008) and will continue for a year taking Fingolimod, but not knowing the dose. After another year it will change to Open Label where all subjects will know the dose they are on.
Cost: < $25 monthly
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