Gilenya

[candy158]

Has anyone tried Gilenya ???  Were there any issues while starting or while being on it ???  

Thanks in advance
Candy

[Cann1980]

Candy I have just started this a month ago.

I think it is great! The first dose was a bit boring and my heart rate did drop but it is expected and I was in the safe zone.
The week I started I was also on a round of steroids which causes me havoc on my body so it was hard to decipher if my groans and annouances were steroids or Gilenya... In the end anything nothing me was all gone after a few days rest from the steroids.

I was on rebif previously which I did horribly on ... And I feel like a million bucks now not having the constant flu symptoms and after having the steroids to reset my system.

I did have heart palpitations but they did extra ECG and all is fine ... I have one the odd time now and I am on week 4 I think now ... This is my only side effect of Gilenya and they say it will go away too which I believe bc it is gradually decreasing

Gilenya is not a popular treatment ... But it has good report card for effectiveness ... My very popular drug store pharmasict said I was the first she ever dispensed to.

My doc decided this one for me... We are saving tysabri as a third line treatment for me .. My last year being diagnosed has been a wild journey and nothing is keeping the beast at bay so I have much hope riding on this treatment. If Gilenya works to keep or get things back to normal for me I feel like it will be a miracle ... Only time will tell for me though .. I can't help u there.

If you have any questions let me know ... I only have a months experience so far though. :)
Cann

[doublevision1]

On FB, search for "Gilenya Users Support Group." Medhelp doesn't allow FB links to be posted.

[doublevision1]

I recall that TLC_31 has said that he had to discontinue Gilenya due to cardiac side effects. I can't recall anyone else here (of the regulars) who has tried it.

Try searching the forum using Gilenya as keyword, to read past posts about it.

If you're on Facebook, search for the private group Gilenya. I joined it recently, and the Tysabri group too, as I'm facing the same decision you are, Candy.

[candy158]

nobody is answering, so I guess, that kinda tells me something huh???

[Guitar_grrrl]

I'm sure other Gilenya users will pipe in, as well.  I've read Gilenya is right up there toward the success rates of Tysabri re: relapse activity and slowing of disability.  I hope you do well on it.  You definitely deserve a break!

[Jifr]

Hi there. For the most part, Gilenya did what it was supposed to do... too well. My WBC counts kept getting too low. Your doc will watch you closely for that in the beginning though. Most people have been having great results on it so hopefully one of them will chime in. I eventually had to come off of it. If you're going to go on gilenya, I hope it's the right fit for you!