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Thread: Riluzole

  1. #21
    Terry, Ellie

    Thank you for your quick replies.

    Doug

  2. #22
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    Hello Doug, We have found that if you don't swallow it straight down with a drink, it will numb your lips and mouth. If you touch the tablet with wet hands it starts to dissolve real quick. The coating on the tablet stops all this until it reaches the right place... your stomach! Thought you might like to know that we (my husband, Ed) has experienced this tingling like you. Best wishes Fru

  3. #23
    Forum Member Terry's Avatar
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    What make of Riluzole do you have Fru;

    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 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.

  4. #24
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    Hello Terry, just looking at the box... Glentek. One twice a day. We don't know if it is doing any good or not but bloods are fine
    Fru. (Have been away much of the summer but will post on other threads)

  5. #25
    Forum Member Terry's Avatar
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    Hi Fru;

    Glentek ones have a very poor coating so I would change the brand as soon as possible if melting in the mouth.

    I have on my repeat prescription:-

    Riluzole Teva 56 x 50mg (ONE TO BE TAKEN TWICE A DAY (NOT GLENTECH BRAND prefers teva or actavis), 56 tablet)

    Glentek has a poor covering and is quite likely to melt before swallowing properly. These could be good if crushing them to put down a feeding tube but you can sometimes get a liquid Riluzole for that.

    Ask your GP to prescribe "Teva" branded riluzole or if not "Actavis" branded ones.

    Get him to do that straight away and stop taking the Glentek ones when the new ones come. Keep a few weeks supply when you reorder as there can be some delays.

    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 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.

  6. #26
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    Thanks Terry, I will look into this for the next round.
    Fru

  7. #27
    Fru

    Thank you for your reply about tingling. Sounds very similar.

    I'm asking my clinic what they recommend.

    Doug

  8. #28
    This is the specialist MND nurse's reply about how to take Riluzole - and, helpfully, other drugs:

    In general, all drugs are better taken 30 minutes before or at least 1 hour after food to avoid loss of absorption due to mixing with food, with the exception of NSAIDs (e.g. ibuprofen) which are better taken with food to protect the stomach lining.

    Doug

  9. #29
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    The other thing I would suggest is to ensure you have the regular blood tests to ensure you have no adverse side effects to the drug. Unfortunately my poor Mum ended up having reaction to it and it caused liver damage, she spent a long month in the hospital getting better again. :-( Most ppl get on well with it though so wishing you all the best with it. x

  10. #30
    Yes, Freesia30 - regular blood tests for liver function are necessary with Riluzole.

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