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Is Gilenya as bad as it sounds?

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    #16
    Status update

    Well, so far so good. I had increased lesion activity after going off Tysabri and onto Gilenya. Sounds discouraging, but it wasn't unexpected. Many people were found to have increased relapes after going off Tysabry; I think some neuros call it the rebound effect. Anyway, after a relapse with new symptoms and some steroids, things seem to ave leveled out. I am due for another MRI in December, so we'll find out if the Gilenya appears to be doing anything or not. I'm inclined to think it is; There seemed to be an expectation on my neuro's part that Gilenya takes a little while to "build" to therapeutic level. Not sure if that's the same premise they apply to drugs like Coumadin or anti-depressants, but I'm a metaphorical thinker, so that's how I try to understand it.

    Gilenya IS acting par for the course as it relates to side effects. I haven't had any I can't live with, but it seems to me I am one of the lucky few succeptible to respiratory side effects. I am frequently short of breath since going on Gilenya. This is not fun when I become aware of it, but it is harder to compensate for with a respiratory infection.

    I have a productive cough right now (in medical terms that means I'm snotty, sorry) but it isn't as productive as, say, the common cold. What THIS particular bug is causing is lung pain and a feeling of oxygen starvation. By the end of the day, I feel REALLY tired and my lungs hurt. I know I'll kick this, but this is the first DMD I've been on that I felt like I might be more prone to immune system collateral damage.

    I miss Tysabri.

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