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    Riluzole

    My husband has just started taking riluzole and he is feeling terribly nauseous with a pounding headache, has anyone else had this after starting it? X
    Carer for my husband who was diagnosed with ALS on 15.12.21.
    Trying to think of only today and tomorrow
    Alison ♥

    #2
    Oh Alison, he's unfortunate to get the double whammy

    Nausea is a 'very common' side effect of Riluzole, headache is a 'common' side effect.

    I had nausea and fatigue at first but thankfully both lessened, then went, after a few weeks - my nausea was only mild though, so was bearable.

    If he is taking 2 per day, he could try just taking it once per day, maybe with some dry crackers, and see if that makes a difference.

    If the side effects prove too onerous, even though it will be disappointing, he can stop taking it - it is *not* a wonder drug by any means and day-to-day quality of life should trump all. xx
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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      #3
      Thanks Ellie, I think he wants to stop taking it, can’t have him feeling like this on top of everything else, xx
      Carer for my husband who was diagnosed with ALS on 15.12.21.
      Trying to think of only today and tomorrow
      Alison ♥

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        #4
        I had similar problems with Riluzole. Was absolutely fine for the first two weeks, then gradually felt more and more nauseous over the next four weeks, along with extreme tiredness and generally feeling grotty. I had been feeling really fit and well before starting Riluzole, so decided it wasn't for me. Within three days of stopping the Riluzole, I felt back to normal again.
        Diagnosed November 21, ALS limb onset, started in right hand June 2020

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          #5
          Maybe reduce to one a day. Keep a pain log. I've suffered very bad head pain re another neurological problem. Dihydrocodiene was my go to drug for pain.

          I recall you saying re his bad headache and maybe they need to find a good pain relief as pain really can cause us to be so miserable xx
          Diagnosed May 2021 bulbar onset als.

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            #6
            Doggymama my experience of taking Riluzole was exactly as described by Jane.
            I tried on 2 separate occasions just to be sure but it was the same both times. I was so nauseous I didnt want to eat and was very lethargic.
            I stopped as it was effecting my quality of life.
            Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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              #7
              Thank you so much for the replies. Will see if he will take one a day and see how he is xx
              Carer for my husband who was diagnosed with ALS on 15.12.21.
              Trying to think of only today and tomorrow
              Alison ♥

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                #8
                Same for me, went back to 1 a day, then bak to 2, no issues now
                Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

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                  #9
                  Just reading this tread. I personally don’t take any Riluzole. Read somewhere it only improves life expectancy by 1-3 month. not sure that’s worth it. But anyways that’s just my opinion. Hope I am wrong for you all.

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                    #10
                    They haven't been able to test the effectiveness of riluzole but they believe it delays the time of the need for niv.

                    Diagnosed May 2021 bulbar onset als.

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                      #11
                      Originally posted by Marc from London View Post
                      Just reading this tread. I personally don’t take any Riluzole. Read somewhere it only improves life expectancy by 1-3 month. not sure that’s worth it. But anyways that’s just my opinion. Hope I am wrong for you all.
                      My Neuro said it was at least 10%. If you are slow progressing that makes it very much worth it in my book 👍
                      Foxes Never Quit 💙

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                        #12
                        Originally posted by Marc from London View Post
                        Read somewhere it only improves life expectancy by 1-3 month.
                        That was the finding from the clinical trial - clinical trials are for a defined (short enough) period and are not representative of the 'what happened after'.

                        Real World Evidence on Riluzole shows it improves life expectancy for significantly longer. xx
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                          #13
                          Unfortunately side effects just too bad for my husband, has had to stop taking it. xx
                          Carer for my husband who was diagnosed with ALS on 15.12.21.
                          Trying to think of only today and tomorrow
                          Alison ♥

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