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Thread: riluzole - updated research

  1. #1
    Forum Member nunhead_man's Avatar
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    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
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  2. #2
    Forum Member Terry's Avatar
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    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
    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.

  3. #3
    Forum Member Ellie's Avatar
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    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.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #4
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    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.

  5. #5
    Forum Member Terry's Avatar
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    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

  6. #6
    Forum Member Puddy's Avatar
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    Hi Terry, why is that important, please?




    Husband, Nigel, diagnosed with ALS in July 2019. We live in Spain and the medical care is superb. Nigel currently taking Riluzole. Tried acupuncture/Chinese medicine and bee venom (privately), but not helpful.

  7. #7
    Forum Member Ellie's Avatar
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    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.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #8
    Forum Member Terry's Avatar
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    Hi Puddy,

    It has lots of unpleasant things and can make you feel funny, light headed and sick. This is just my opinion but I strongly believe that many of the people that have problems with it is because it starts to dissolve. Some brands dissolve quicker that others and I was told to take it with a bit of yogurt if needed.

    What brand do you have?

    Love Terry

  9. #9
    Forum Member Puddy's Avatar
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    Quote Originally Posted by Ellie View Post
    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.
    Quote Originally Posted by Terry View Post
    Hi Puddy,

    It has lots of unpleasant things and can make you feel funny, light headed and sick. This is just my opinion but I strongly believe that many of the people that have problems with it is because it starts to dissolve. Some brands dissolve quicker that others and I was told to take it with a bit of yogurt if needed.

    What brand do you have?

    Love Terry
    Nige has Riluzol SUN 50mg. It may be a Spanish 'make'. Thanks both.




    Husband, Nigel, diagnosed with ALS in July 2019. We live in Spain and the medical care is superb. Nigel currently taking Riluzole. Tried acupuncture/Chinese medicine and bee venom (privately), but not helpful.

  10. #10
    Forum Member Kayleigh's Avatar
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    Hi Puddy,

    Greetings from rainy England!

    I find the SUN brand tablets have a better coating on them compared to other brands like Glentek (I don't find the Glentek brand easy to swallow before they start dissolving).

    I hope Nigel finds the Sun tablets are ok for him to swallow easily. (For anyone unable to swallow tablets, Riluzole is also available in liquid form.)

    How are you both in sunny Spain? Weather here in England today is rather dull - lots of non-stop rain for most of the day (typical British Summer! LOL).

    Love and best wishes to you and Nigel,
    Kayleigh xx
    Last edited by Kayleigh; 14th August 2019 at 19:23.

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