may have to start Gilenya

Gilenya, or Fingolimod, is the first approved oral disease modifying drug for MS.
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Posts: 9
Joined: Tue Apr 21, 2015 8:51 pm
Location: S.E. Washington State

may have to start Gilenya

Post by proudmutt » Thu Apr 23, 2015 4:50 pm

I registered on this forum largely to find people taking Gilenya and ask about how likely side effects to it are. And WHAT they are most likely to be.
personally I am the side effects queen - to almost all pharmaceuticals. my entire ms history is one with a wide trail of discarded meds I could not tolerate. when I can finally manage to find one that I can tolerate and it works too, I am ECSTATIC!!!
I was fortunate enough to get on Novantrone and Copaxone which, respectively detuned my initial lesions and inflammation, then kept me lesion free for almost 10 years!
then I had to switch and went to Tecfidera without mishap (!) which worked perfectly for another year.
now that I am turning 65 and forced to go on Medicare, they are denying Tecfidera and forcing me to EXPERIMENT with Gilenya.
I don't want to take it at all after reading the S.E. list (I have never balked at one before, but that one is over and beyond the pale!).
And that was before reading the bulk of the comments here.
I already have severe back problems (and accompanying pain), severe ms fatigue, am on enough drugs that are after my liver, and if diarrhea is a possible S.E., well being pretty much restricted to a wheelchair because of my back, rushing to the toilet sounds like a complete deal breaker. not to sound over fastidious or anything.

Any input much appreciated. all I have read so far I am absorbing and it also is much appreciated. thank you!

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Joined: Sun Jun 05, 2016 7:54 pm

Re: may have to start Gilenya

Post by Brichardson22 » Sun Jun 05, 2016 8:03 pm

How has your experience been? I start Gilenya tomorrow.


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