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Riluzole - worth taking??

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    #31
    It's a hard one all round. My partner doesn't want extra months with MND and similar to Matthew, he's at peace with this. I respect his decision and understand his thoughts on it, however the whole 'giving up' mentality secretly killing me inside. But I can't be selfish about it. We have very similar outlooks and so I can see why..

    Learning from everyone on the forum, that every decision is very personal and can relate to morals, outlook, age, family setup etc. Whatever the reasons you'll know the right thing to do.

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      #32
      hi tess and matthew and everyone else
      i can understand why you have chosen to take this path and i think stephen was thinking along similar lines. its the waiting and wondering what to expect and when.
      big hug to everyone
      xxx

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        #33
        Jules.....I started taking Riluzole as I was told it can give some people two or three months longer and was worth a try. The first week I didn't notice anything, so thought I must be fine with it, so forgot it. Then I started getting background feeling of sickness which I ignored, then thought maybe I had eaten something bad, then that I might have a bug. I began to feel really ill and terribly tired. Eventually it dawned on me that it was a side effect (confirmed by the nurse), so I stopped it and after a few days felt so much better, what a relief. But it sounds like most people are fine with it, worth giving it a go?
        Love
        Heather

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          #34
          I have been taking Riluzole since diagnosis mid August and have had no side effects thus far.

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            #35
            Can we drink alcohol on riluzole as I do love a few beers but herd it’s not good to mix so decided against it as Budweiser is my best friend.

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              #36
              I started drinking (moderately) again when I realized what I had. I drank while taking Rizole and am still doing it now that I don't. No side effects no change. Drunk or Sober time ticks on. 😉😊

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                #37
                House44 Wayne, there is no mention of alcohol in Riluzole's info leaflets.

                Riluzole can make some people drowsy or dizzy, especially in the beginning, so that's something to bear in mind. I'd say the majority of people on the forum drink alcohol and take Riluzole.

                Love Ellie.
                ​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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                  #38
                  I'm still drinking moderately, although red wine often involves a coughing fit. 😉

                  Not noticed any side effects, although my breathing doesn't seem as good, but that may also be due to the MND.
                  Each day is made easier with a bit of humour.

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                    #39
                    I've definitely carried on with the red wine and occasional IPA! I did ask this question and was told "we're monitoring your liver function and will let you know if we're worried " So far so good!
                    Best

                    Robin

                    Diagnosed 05/2017 Familial ALS Limb onset

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                      #40
                      I’m still drinking and blood tests are not showing any problems with kidney or liver, although I will admit it does effect my balance it bit more, but that could be the beer, no I’ll blame the riluzole. My only side effect seems to be with spicy food gives me severe heartburn now.
                      s
                      As long as there’s golf and beer I’m happy

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