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Thread: Riluzole brands

  1. #1

    Riluzole brands

    I've been on Riluzole for a while, but my pharmacy supplies different makes, e.g. Glentek and Sun Pharma. Is there any difference in their effectiveness?

    Dave

  2. #2
    Hi Dave

    Not really. I get mine online and delivered and have had various brands over the years. Some are said to disolve too quickly in the mouth, giving rise to a tingling sensation. But if you can swallow normally it's not a problem.

    Doug

  3. #3
    Forum Member Lynne K's Avatar
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    I too have had mostly Glentek and once Sun Pharma. The Glentek dissolve quik and Sun Pharma have a better coating so don't and because of this are easier to swallow.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  4. #4
    Forum Member Terry's Avatar
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    Hi Dave and welcome to the forum;

    There are many different makers of Riluzole and they should be all made to the same formula. Lynne quite rightly says that the Glentek brand dissolve very quickly and that can cause problems.

    Best wishes, 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 keep 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.

  5. #5
    Forum Member nunhead_man's Avatar
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    Good morning

    Hope everyone is having a good bank holiday Monday?

    I too am stuck with Glentek and as mentioned above, they do dissolve quite quickly in the mouth if you are not careful careful and then leave a nasty aftertaste - also Ellie of this forum suggests that absorption in the mouth is not as effective as absorption in the gut, which is where it is supposed to be absorbed.

    Doug - where would you go online to get yours?

    I have had no luck in getting the Sun Pharmaceutical version which I prefer

    Warmly
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  6. #6
    Forum Member Terry's Avatar
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    Hi Andy;

    Try Teva, Actavis, Rilutek or Sun, they are all good. Only Glentek has that problem as far as I know.

    Also if you do find a brand that's OK, try and get a few months supply.

    If you have no option but the dreaded Glentek, then have with a little yogurt or something so as you can swallow straight away.

    Love Terry

  7. #7
    Andy

    I use www.pharmacy2u.co.uk

    Doug

  8. #8
    Forum Member Sueb's Avatar
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    Steve has lot of problems with Glentek. It makes lips and tongue tingle. He takes it with yoghurt. We have had sun pharmaceuticals one recently

    Sue

  9. #9
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    Hi I was feeling naseus wth two riluzole a day consultant said try one a day for a month nausea much less now bit worried my condition may progress does everyone take 2 a day usually

  10. #10
    Forum Member Ellie's Avatar
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    Hi Elvis.

    If, after the month, 2 riluzole per day still cause nausea, you can decide to stick with one per day or stop taking them all together.

    Yes, most people take 2 per day - that's the recommended dose - but there are lots who don't take it because of liver issues, nausea, lethargy or they simply don't want it, so don't beat yourself up about it.

    Our days are tough enough without constantly feeling sick!!

    I know riluzole is best taken on an empty stomach, but have you tried taking it with a small amount of (low-fat) food - a biscuit, cracker, cereal, yoghurt etc, depending on your swallow.

    Best wishes.

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

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