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Update: Gilenya day 3

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    Update: Gilenya day 3

    And it's going...GREAT!!!(So far). No side effects to speak of other than an extremely minor headache. I woke up this morning feeling the best I have felt in soooo long. I take the low dose 0.5 mg. But the nurse at my MS specialist said they are in the middle of a clinical trial where you get, I think,4 infusions one year, a couple the next year and no more MS meds EVER!!! If that works out, how awesome would this be?!?!

    Well friends, I just thought I would let you all know how well it's going on day 3. Anyone else on or about day 3 so we can chronicle our journey?
    From the love of one MSer to another,
    Lizzy

    #2
    and this clinical trial is for gilenya infusions?
    Dx: 08/09

    Copaxone: 09/09

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      #3
      Hey Lizzy! Happy to hear you are feeling great. I am also soon to start this med. Can't wait. Before I start I need to get an EKG, some pulmonary function tests, MORE blood work & an optho evaluation for my eyes done per doc"s orders...not a problem though. Did you need to do this as well? I am very excited to get Gilenya rolling. Hope you stay on the up & up! .....Good luck......Mike

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        #4
        Mike...

        Hi Mike. The day I started Gilenya, the nurse came in to check my pulse once every hour for 6 hrs. I had an eye exam back in june, so I didn't need one before but I do have to have one in 3 months. They didn't have me do an EKG but I had one about a month ago when I was put in the hospital. I'm doing ok so far except maybe a slight headache after I take it. Good luck and my email address is in my profile if u need to contact me but definitely keep me up to date on how you're doing!

        Lizzy

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          #5
          Thanks Liz..... i will
          Mike

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            #6
            bizzylizzy -

            I just heard about that infusion the other night at a workshop.

            We learned about:

            Gilenya

            Cladribine (pill which is in trial, but the European FDA just released a negative opinion on it)

            Laquinomod (another pill in trial)

            Alemtuzamab (Campath - Infusion at hospital for 5 days, then 1 year later another 5 day infusion, and no other MS treatment ever. It is as close as you can get to a stem cell transplant.)

            Rituxamab/Ocreluzimab (not sure on dosing - think it's an infusion 1x week for 4 weeks, and then every 6 months).

            I hope your Gilenya continues to work well and that you suffer no serious side effects.



            It was great to learn about all of the things coming down the pike for MS treatment.

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              #7
              Please continue to keep us informed on your experiences with Gilenya. I am seeing my Dr. next week and want to see about stopping copaxone (after 12 years) and trying Gilenya.

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