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Riluzole - worth taking??

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    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

    #2
    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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      #3
      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
      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.

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        #4
        Hi Lynne,

        i hope you are keeping well in this hot weather.

        Love Graham
        Copyright Graham

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          #5
          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, 12:55.
          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.

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            #6
            I am starting this therapy after my feeding tube is fitted next month. Has anybody noticed any improvements?

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              #7
              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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                #8
                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, 10:57.

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                  #9
                  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
                  Copyright Graham

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                    #10
                    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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                      #11
                      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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                        #12
                        That must a relief for you John.

                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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                          #13
                          I have been taking Riluzole for the past 6 months, twice a day, before meals, and do not believe I have had any side affects.
                          The question of whether it helps or not, is a good one, I have no idea. After 6 months I am "lucky" enough that only my arms have been affected, but they are progressively getting worse, but slowly, so I don't know if it has been the tablets that have slowed down the atrophy.
                          Diagnosed 2nd Jan 2020
                          Both arms/shoulders affected, left worse than right.
                          Progressive Muscular Atrophy suspected

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                            #14
                            You're absolutely right Beemer.

                            None of us taking it can be our own control. But if you have no side effects and your liver function (ALT levels) are ok you might as well take as it's the only UK approved MND drug.

                            Doug

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                              #15
                              Originally posted by Beemer View Post
                              I have been taking Riluzole for the past 6 months, twice a day, before meals, and do not believe I have had any side affects.
                              The question of whether it helps or not, is a good one, I have no idea. After 6 months I am "lucky" enough that only my arms have been affected, but they are progressively getting worse, but slowly, so I don't know if it has been the tablets that have slowed down the atrophy.
                              Hi, I did the same initially (took Riluzone before meals sometimes) until I read about a better way to take it. Food, especially fats hinders the uptake of it. So it’s advised to take it at least 1 hour before meals and no less than 2 hours after meals. It takes a bit of organising at first but becomes habitual after a short time. I’ve been doing this for a long time now with only an occasional blip ie when eating with friends or eating out. On these occasions we have no v control over meal times so I do as best I can. Lynne
                              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.

                              Comment

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