Questions?

[diguilio]

HI

CAN SOMEONE PLEASE TELL ME IF GILENYA WORKS?

[Redwings]

Hi diguilio:
What do you mean by "works"?

[Just a small town girl]

Like any disease modifier, it seems to work beautifully for some and troublesomely, if at all, for others.

The various trials found that it was 50% more effective than Avonex in head to head trials (and thus presumably 50% more effective than the other CRAB drugs which all have about the same efficacy rates).

The major trade off is the long list of potential side effects (heart issues, macular edema, elevated liver enzymes, etc.).

I've been on Gilenya for 8 months now and personally, I don't think I could be on a better drug. As for side effects, on a daily basis I feel no different than when I take my vitamin D and fish oil. I had issues with elevated liver enzymes and too low lymphocyte counts but both of those issues resolved on their own.

As for efficacy, my May MRI was dramatically different. All of my lesions had either shrunken, grown less intense or just plain disappeared including my very worst one. You know something is working when your neuro is literally giddy like a little kid and telling you that this exceeded her expectations even though she's run two different MS clinics. Also, I only just now had a relapse (so 8 months with no problems).

So, I hope this helps. Please feel free to reach out to us. Some of us have had great experiences (that's me) and other's have had problems. Like any med, it works differently for different people, but I'd like to think I'm proof that it can work.

[90STANG]

Does anybody know if it works more so if you have lesions in the brain or spine? My Nero said he thought it helped more with the brain lesions. Where as I having walking issues and he didn't think it would help me much.

Has it helped anybody with spasticity or fatigue problems?

Thanks,
Gary

[Redwings]

CAN SOMEONE PLEASE TELL ME IF GILENYA WORKS?

Does anybody know if it works more so if you have lesions in the brain or spine? My Nero said he thought it helped more with the brain lesions. Where as I having walking issues and he didn't think it would help me much.

Has it helped anybody with spasticity or fatigue problems?

These types of questions are precisely why I asked, "What do you mean by 'works'?" They illustrate a nonspecific and unrealistic view of "works."

It isn't the custom of the FDA to approve, or doctors to prescribe, medications that "don't work" for anyone. The prescribing information for Gilenya specifies: "GILENYA is indicated for the treatment of patients with relapsing forms of multiple sclerosis (MS) to reduce the frequency of clinical exacerbations and to delay the accumulation of physical disability." FDA-mandated clinical testing showed that Gilenya did that, in the test subjects, to a statistically significant degree when compared to placebo.

As with any medication, it doesn't do for everyone what it's approved, or expected, to do. But it does it well enough for enough people to say it "works."

But it only works to do what it's supposed to. It doesn't cure toenail fungus or make someone's hair shiny. It doesn't heal lesions. It doesn't enable someone to get up out of a wheelchair and walk when they haven't walked in years. It probably doesn't help with spasticity and fatigue. But it isn't supposed to. It might help someone to recover lost abilities or ease symptoms as better control of the underlying disease processes allows healing, but that isn't the purpose. It can't be said that Gilenya "doesn't work" if it doesn't do something it isn't supposed to do.

Gary, Gilenya's purpose is to prevent the formation of new lesions, not affect existing lesions, so there's no issue of it "working more so" based on the location of a lesion. It also isn't involved in walking or symptom relief. Could you maybe be thinking about Ampyra instead of Gilenya? Ampyra is a "function" medication that might help the things you asked about.