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What is Gilenya supposed to do?

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    What is Gilenya supposed to do?

    I've been on Gilenya since the day I was dx'ed this past May. Since it's the first DMD that I've ever been on, I have nothing to compare it with. Since the day of my dx I've had pretty much the same symptoms, with the intensity of these symptoms sometimes varying. Other than that, I don't see any change.

    Am I correct in thinking that Gilenya really isn't designed to address symptoms directly? Instead, isn't it supposed to trap those nasty cells that your immune system sends out to attack the myelin?

    Then if my logic is correct, Gilenya really has nothing directly to do with existing symptoms. It has everything to do with preventing more lesions and thus preventing more symptoms, but really has nothing to do with existing symptoms. Am I on the right track here? Or is it also intended to help reduce existing symptoms by helping the myelin have a chance to heal by preventing more relapses?
    "He is no fool who gives what he cannot keep to gain what he cannot lose." - Jim Elliot

    RRMS, dx May 2013, on Gilenya from May '13 - Aug. 14
    Currently following Dr. Jelinek's OMS (Overcoming MS) plan

    #2
    Then if my logic is correct, Gilenya really has nothing directly to do with existing symptoms. It has everything to do with preventing more lesions and thus preventing more symptoms, but really has nothing to do with existing symptoms. Am I on the right track here? Or is it also intended to help reduce existing symptoms by helping the myelin have a chance to heal by preventing more relapses?

    You are correct, as my last neuro said to me meds do not help what has already been done. So, hopefully you will have less flares while on Gilenya.

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      #3
      Originally posted by miwealia View Post
      Am I correct in thinking that Gilenya really isn't designed to address symptoms directly? Instead, isn't it supposed to trap those nasty cells that your immune system sends out to attack the myelin?
      Yes, you are correct! The purpose is Gilenya is to control the immune processes that lead to the damage of myelin and the relapses that indicate the inflammatory events during which that happens. Gilenya is not intended to treat symptoms in any way.

      Or is it also intended to help reduce existing symptoms by helping the myelin have a chance to heal by preventing more relapses?
      No, Gilenya is not intended to reduce existing symptoms in any way. And you'll notice that there's nothing in any of the official Gilenya literature that even comes close to implying anything like that.

      However, it can and does happen that existing symptoms do get better sometimes as Gilenya - or any of the DMD's - helps to prevent the immune processes the can interfere with healing of previous damage - just as you have proposed. It's what happens normally in the "remitting" phase of relapsing-remitting MS. The intent of Gilenya is to increase the time between relapses, during which existing symptoms might or might not get better. But, while it might happen, the healing of lesions and the possible easing or disappearance of existing symptoms isn't the intent of Gilenya. Sometimes damage doesn't heal and symptoms don't get better. But Gilenya doesn't do anything that affects whether damage does or doesn't heal.

      So if you don't feel any difference in your symptoms since being on Gilenya, that makes perfect sense. Gilenya doesn't do anything directly to heal lesions and doesn't do anything directly to affect symptoms. And because Gilenya doesn't have any mechanism for affecting healing, it doesn't really even reduce symptoms indirectly. Whether symptoms get better or don't is unrelated to what Gilenya does.

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        #4
        Thanks!

        Okay, thanks for your responses and explanations. It helps to have a realistic expectation of what a drug is supposed to do.
        "He is no fool who gives what he cannot keep to gain what he cannot lose." - Jim Elliot

        RRMS, dx May 2013, on Gilenya from May '13 - Aug. 14
        Currently following Dr. Jelinek's OMS (Overcoming MS) plan

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