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riluzole - updated research

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  • Ellie
    replied
    Hi Puddy,

    If riluzole dissolves on the tongue, it can cause numbness and taste unpleasant too.

    It doesn't lessen its efficacy but if the tongue is numb, it may be bitten.

    So, not as much of a medicinal importance, more of a potential yuck or ouch !!

    Oh, and it's best taken on an empty stomach - if it causes Nigel a bit of nausea, it's OK to eat a few crackers or plain biscuits with it.

    Love Ellie.

    Leave a comment:


  • Puddy
    replied
    Hi Terry, why is that important, please?

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  • Terry
    replied
    Hi Billy,

    I can understand people not taking riluzole for a couple of reasons but the vast majority of us do and don't have any perceived problems.

    It's very important that they don't start to dissolve in the mouth and throat.

    Love Terry

    Leave a comment:


  • billy106
    replied
    Dont see any reason taking Riluzole , to give you a so called life extension of 2 to 3 months. but side effects actually giving your immune system a kicking . 1 step foward 4 back.

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  • Ellie
    replied
    The Real World Evidence (RWE) on Riluzole has long shown better outcomes vs its clinical trial data.

    I remember posting about this before.

    Love Ellie.

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  • Terry
    replied
    Hi Andy;

    That was always my impression but a trail on Mnd people after 10 years would be very hard to get any worthwhile statistics.

    A cure would be great but I'm surprised that after 20 years, nothing a bit better has been found and proved to work in trails.

    Love Terry

    Leave a comment:


  • nunhead_man
    started a topic riluzole - updated research

    riluzole - updated research

    From Lee Millard on the Facebook group MND Warriors....

    The 2 or 3 months is highly misleading as it is based on the 3 original trials which only lasted 18 months. So the conclusions could only be made on that period. What about someone who has taken it for 5 years or 10 years?

    Now 20 years after the drug arrived, data has been reanalysed, along with real life experiences, and the general view is that it gives 10% extra life. So someone on it for 10 years, might get 3 years extra.

    This is not as crazy as it sounds, as for a cure we need a many 100% improvement/extension but also someone who experiences fast progression, the extension will be short, like 1 to 3 months.

    Here’s a recent paper

    https://www.thelancet.com/.../PIIS14...18)30054-1.pdf
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