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Thread: Rizule (sorry about the spelling)

  1. #1
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    Rizule (sorry about the spelling)

    Hi all my friends
    As you guys know mum has just been diagnosed mnd als, rapid decline in body but speach and breathing ok, speech is a tiny bit different, she has been offered rizule tablet, does this help? Does it slow it down and r there side effects to it. My mum kinds thinks there's no point taking it. If I can pass on some positive feedback it may help her,

    Please please I'm despo for realistic affect of this drug
    Xx
    Sharon

  2. #2
    Forum Member pete's Avatar
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    Hi Sharon ,,

    It's no miracle drug and it don't work the same for everyone ,the reason it's prescribed is simply because there isn't anything else and the drug is supposed to go delay breathing issues in the later stages of disease, no one knows ,but if it does not cause side effects ,then why not ,your monitored with blood tests initially .hope this helps.

    Pete

  3. #3
    Forum Member Terry's Avatar
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    Hi Sharon;

    I'm afraid, it's much as Pete said, like him, if it is OK for your Mum to take, then why not. Riluzole is probably the right spelling.

    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. #4
    Forum Member JAY TEE's Avatar
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    Sharon .. I. was formally diagnosed 2yrs ago and have been taking riluzole since.. No side effects and blood tests ok. Not doing to bad walking with a Zimmer frame and my speech a bit more slurred now. My soliva a bit worse and put on Hyoscine patch which helps. They say the riluzole does help and I will keep taking it.
    Best wishes
    Jay Tee

  5. #5
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    Hi I have just started to take Riluzole just done the first month so got to have a blood test for the first few months. Some people suffer nausea etc but I've ok regarding that. I wasn't sure what good it would do but as it is the only bit of medication on offer I felt it was best to try.

  6. #6
    Forum Member Dude's Avatar
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    Don't diss Riluzole . I believe it's added a year to my life. Dude x

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