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Thread: Riluzole

  1. #51
    Forum Member
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    Hi Guys, I've only seen my consultant once and he said he'd put me on riluzole if I wanted but was quite dismissive of it. If I enter a trial I'll be taking it then, but what do you think of it?
    Thankyou,
    Lisa x

  2. #52
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    Nov 2017
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    What trial are you entering? Most trials I’ve been aware of say you have never had to have taken Riluzole. My daughter got the liquid form from her consultant no problem,

  3. #53
    Forum Member Ellie's Avatar
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    Oct 2012
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    Well, it's the only licensed med for ALS we have in Europe atm, so I'm all for it, but it is up to each of us what meds and interventions we do or don't want to take/have.

    It's best started as early as possible in the disease and although the trial results showed a measly 3 month extension in life, it's not known how accurate that is.

    It is thought to delay the need for NIV.

    You do need regular blood tests to keep an eye on your liver enzymes.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #54
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    Hi Jaxx, that's what I meant, that I wouldn't be able to take it if I wanted to do a trial,but would be exoected to when on it. Mirocals is the one Ive been asked about but it sounds quite difficult compared to others I've read about (but can't go on!)

    Hi Ellie, I'd definitely be interested in delayed progression and NIV. The consultant and MND people didn't feel they'd seen a significant difference in life span, but that's anecdotal I guess. I guess if Mirocal is the only recruiting trial in my area i could start on Riluzole, or wait until after the MND conference and see if there are others in the pipeline. Although from what I've read, earlier intervention is better..

    love Lisa x

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