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Thread: Riluzole

  1. #1
    Forum Member nunhead_man's Avatar
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    Riluzole

    A newbie question - move me on if needs be?

    I've just been prescribed Riluzole, organised blood tests etc.

    My question is how to take it - I'm not good at swallowing pills (no general problems with swallowing just now) and tend to crunch them and that gives me a kind of temporary numbness in my mouth - washing down with lots of water helps

    is this par for the course?

  2. #2
    Forum Member Ellie's Avatar
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    Hi Andy,

    You're not alone!

    Some brands of Riluzole are worse than others for the numb mouth issue. It's to do with how good, or bad, the coating is, so the trick is to swallow it quickly. Try it with a small bit of thick yoghurt, not much mind you, Riluzole works best on an empty tummy...

    Ellie x.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  3. #3
    Forum Member Terry's Avatar
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    Hi Andy,

    As Ellie said, some brands melt devolve a lot quicker than others. Have a look at this thread.

    http://forum.mndassociation.org/show...light=Riluzole

    Take it an hour before and two hours after food if possible but don't worry too much and about twelve hours in between.

    Probably once a month I end up taking it with food.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keeps us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  4. #4
    Forum Member nunhead_man's Avatar
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    Steep learning curve this!

    Thanks both

    I have the Glenmark stuff from the Czech Republic

    Now have the swallowing bit sorted and am on tab 4 so will come back after a week or so - no nauseau or other oddness yet

  5. #5
    Forum Member Ellie's Avatar
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    Quote Originally Posted by nunhead_man View Post


    - no ... other oddness yet
    Don't worry Andy, the oddness will come, then you'll be as bonkers as the rest of us

    Love Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  6. #6
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    I just take one first thing in the morning and one in the evening before bed ( usually about 9pm).
    When I first started taking it I found that the morning dose made me a bit spaced out for about an hour. This still happens occasionally. And yes, if I leave it on my tongue it does make it tingle.

  7. #7
    Forum Member nunhead_man's Avatar
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    Thanks Ellie - one peron's bonkers is anothers sanity

    And thanks Andy B the one I tok this am did not seem to affect me at all - 20 miles on the bike around town before lunch.

    Best to all

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    Glad to hear that you are still cycling. Hiking used to be my thing along with 10 mile cycle rides most evenings but sadly it's my legs that are mainly affected so I now struggle to walk a few hundred yards. Such a cruel disease. Keep on your wheels as long as you can safely do so.

    Andy

  9. #9
    Forum Member Terry's Avatar
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    Hi Andy;

    Glenteck are the worse brand for melting, look at my like and at my prescription and get a different brand like the ones I have. They have so much a better coating.

    It's good to exercise but don't push yourself like we used to. Be gentle on your self.

    Ellie, please don't include me as "bonkers", I'm just crazy.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keeps us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  10. #10
    Forum Member nunhead_man's Avatar
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    Coming back to this as the Doc only gave me one months supply so I need more.

    Also the Gentek leaflet says every 12 hours but does not mention before of after food?

    Further the thread you pointed to above dates back is 2017 so was looking to try and find a brand list - without much luck

    Got to here - doies this make sense?

    http://www.medicines.org.uk/emc/search - use "riluzole" for search

    But no Glenteck!

    best

    Andy

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