LONG TERM EFFECTS OF GILENYA

[MellyNJ]

My neurologist wants to put me on a more aggressive treatment (I have been on Rebif since my diagnosis in 2010) since my last MRI showed several new lesions and I had a minor relapse.

I know Gilenya hasn't been around that long but I am concerned about the long term effects of using the drug on the body. ?? Has anyone read anything about this or know anything about long term usage of Gilenya?

Very scary stuff and I just want to be sure that I make the right decision.

Thanks!
Melissa

[MSer102]

I know the manufacturer followed up on the people in the clinical trial but they haven't released the results yet. Other than that I think maybe nobody knows yet what the long term effects are because Gilenya hasn't been around long enough to have gotten to "long term".

[batman12]

No one knows the long term effects of Gilenya but the long term effects of MS are pretty clear

[Orlfairy]

info

I think like all of the other treatments there are good and bad... its just how much you can dodge the bad bullet... I have been on avonex rebif and now gilenya for the last 18 months... I have had some things go wrong but nothing is difinitively due to gilenya.... after taking IM shots for 7 years and SQ shots for another 7.... I am just happy to not be getting shots.... my heart rate is low, my t cells are very low, I have gained some weight.... I think that everyone has to weight the good and bad for their livestyle...

Hopw that helps some!

[MellyNJ]

Gilenya and working out

I think like all of the other treatments there are good and bad... its just how much you can dodge the bad bullet... I have been on avonex rebif and now gilenya for the last 18 months... ...

Thanks for the response Orlfairy, I have one question. Are you able to exercise and if so do you find that Gilenya has any effect on you?

I work out about 3 to 4 times a week so Im hoping that the slow heart rate issue does not prevent me from resuming normal activity.

I start Gilenya this Friday!

[onlyairfare]

For me, the bradycardia was only the first couple weeks, then my resting pulse went back to normal, albeit maybe a little lower than before - perhaps 65 instead of 70. It increases appropriately with exercise and I was never unable to be active. One or two days I had brief episodes of significant bradycardia (down in the upper 40's) at work and felt a little lightheaded, had to sit down for a few minutes.

I've been on Gilenya for 6 months.

[ksal]

Definitely concerns me

I have been concerned about the long term affects as well but definitely it out weighs the alternative in my honest opinion.