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Riluzole - worth taking??

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  • jd58
    replied
    Originally posted by jd58 View Post
    I am starting this therapy after my feeding tube is fitted next month. Has anybody noticed any improvements?
    All fitted last Monday flushing it out daily still in isolation for another week. Though can still eat soft food and shakes. Confirmed i want to take this drug with my consultant - waiting for prescription to start.

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  • Madge
    replied
    I have been taking Riluzole for over a year and no side effects but I don’t know if it is doing me any good. I take it twice a day.

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  • Graham
    replied
    Hi Lynne,

    Sorry for the tardy reply. Good to hear you are getting out. Sounds like a lovely part of the world you visited.

    The hot weather always knocks me for six. Looking forward to a St. Swithens's July.

    Love Graham

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  • jd58
    replied
    Originally posted by matthew55 View Post
    I'm on it twice a day for several weeks now and no side effects. Actually think my regression has slowed down so all good, apart from my unheard plead for the liquid form. ��
    Great to hear Matthew. I'm intending using the liquid form with my PEG...
    Last edited by jd58; 28 July 2020, 09:57.

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  • matthew55
    replied
    I'm on it twice a day for several weeks now and no side effects. Actually think my regression has slowed down so all good, apart from my unheard plead for the liquid form. ��

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  • jd58
    replied
    I am starting this therapy after my feeding tube is fitted next month. Has anybody noticed any improvements?

    Leave a comment:


  • Lynne K
    replied
    Hi Graham, slow reply sorry. I’ve been fine thanks.

    Tuesday late afternoon we went for a drive. We stopped above a nice valley for a while and then explored around about, driving of course. That was a lovely couple of hours. Wednesday we sat out for a couple of hours in our tiny back garden. We had a cold larger to rehydrate and cool down. But we came back in soon after as we felt too hot. Yesterday (Thursday) we stayed in. It’s cool enough in our front room.

    How have you been? Love Lynne
    Last edited by Lynne K; 26 June 2020, 11:55.

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  • Graham
    replied
    Hi Lynne,

    i hope you are keeping well in this hot weather.

    Love Graham

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  • Lynne K
    replied
    Take them as most of us do with no side effects. Do a search on previous posts about when to take them. I’ve written it several times do don’t feel like now. Nearly my bedtime, night night one and all, Lynne

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  • bilvers
    replied
    I've been taking it for 4 weeks with no side effects. Others will say the same on here. You have to press to test with MND! Andy

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  • Jules
    started a topic Riluzole - worth taking??

    Riluzole - worth taking??

    Hi After a couple of falls and a limp starting December I now cant stand or walk, also my speech is slurring. We had to put a bullet up our GP to get anything done and last week was diagnosed with MND. Hell of a shock - the hospital said I could try riluzole - this is all so new and strange to me - are the drugs worth taking? There seems to be a list of side effects. Any thoughts really appreciated - thank you
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