Gilenya and depression

[debjames]

Has anyone that's on Gilenya had depression issues as with the interferons? Can't find any patient info that says it can be a side effect. Thanks!

[CrazyCatLady]

I was told that it is not a side effect. Now Gilenya has only been studied for I think 4 or so years so who knows.

Personally after being on gilenya since Dec 14th I have not had depression, however I did not have it on interferons either.

[Redwings]

Hi debjames:
The prescribing information for Gilenya says that, in one study, 8% of test subjects taking Gilenya reported depression. What makes that figure difficult to interpret is that 7% of test subjects taking the placebo also reported depression. The scant 1% difference between medication and placebo is often interpreted to mean that the med isn't the likely cause of the side effect.

But that isn't absolute. Somewhere in that 8% it's certainly possible that Gilenya really was the cause of the depression. The only way to find out if Gilenya is causing your depression is to stop taking it. If you don't feel better after a few weeks, then that further reduces the chance that Gilenya is responsible. Then, if and when your depression lifts, start taking Gilenya again (it's called a challenge) and see what happens. If the depression starts again, it raises the suspicion that Gilenya is responsible.

The responses of a few self-selected individuals about their experiences in an unscientific sampling doesn't give an accurate picture of the occurrence or possibility of depression from Gilenya. What matters is what happens for you.

[Just a small town girl]

Make sure to talk to your neuro about this. There might be a possibility that the gilenya is causing your depression. Since you have to redo all initial testing if you're off the drug for too long (I think two weeks is the cut off), you want to talk to your neuro about this before stopping your meds, if that's what you decide to do.

[jmel]

Just my 2 cents

I know they have done numerous trials. But, as we all know as more folks start taking a new medication... the safety profile/adverse events profile become more robust over time. I only say this since I have worked in the industry for a while. Definitely report your symptoms. So many of these trials have definitive inc/exc criteria...But once out in the general population... That is the true test... And, I am not saying at all that the medication has not undergone extensive safety testing. To me, even after a medication is approved we are still in an "information gathering" mode.

Good luck with your medication and I hope the depression lessens.

And, thanks for sharing. The more we share our experiences the better.

Take care.

Jmel

[Day11]

Not in agreement sorry

I started "Officially" on Gilenya after being on the double blind study for 2 yrs... I did experience depression sx when I started along with fatigue.... It changed when I took it from day to night and have had TONS of positive change. Gilenya is like most meds, I think it must build up in your system and you level off and the side effects diminish. The first dose is under supervision so it's difficult to just stop it and restart it without spending another 6 hours watching your heart rate. I happen to be "BiPolar" but I debate the diagnosis since I seem to only be "Bipolar" when my fatigue is crazy bad and I feel like crap.

I have been on Gilenya (potentially for 2 years but officially for 3 months) and the "Depression/mood swings/hopeless" feeling had subsided. I am amazingly stable mentally and although I just went through a small flare w/IV steroids to help it along, I feel better than I have in a long time. Usually I have a melt down after a steroid treatment to make life better. I would talk to your Dr and see if it's okay to move it to taking it at night because it really did make a difference for me, I happen to be on Provigil too which can make me a little more anxious. Good luck and although you can "Challenge" the side effects as Redwing pointed out, I think it deserves time and maybe consider a mood stabilizing additive to compensate while adjusting.

Also, I would look at other meds you are taking and see if they have any side effects that effects the emotions, it may be enhanced by the Gilenya since it effects the way your immune system is designed.

Good luck and I hope any DMD you take helps keep the MonSter at bay.

[Mammamia]

I actually believe that Gilenya has improved my depression. However, I have only been on it for 2 weeks so we'll see how it goes.

[MsMarla]

Gilenya - 2 weeks...

Hi, Mammamia. I am SO happy for you that G has helped your depression. I, too, have taken it for two weeks and I don't think I have ever cried as much in my life!!! Is the answer to counter the depression (possibly side effects) with anti-D's? or do you or anyone have any other advice????
IS 2 WEEKS A TELLTALE TIME PERIOD?

I actually believe that Gilenya has improved my depression. However, I have only been on it for 2 weeks so we'll see how it goes.