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    #16
    Taking Riluzole. Been on now coming up 5yrs. Always take half hour before breakfast always weetabix mashed fruit yoghurt and second tablet at 5pm usually hour before tea. Had blood test after first six months then yearly. Best wishes John

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      #17
      Good morning,

      Originally posted by MNDConnect View Post
      The European Medicines Agency product information states that caffeine could potentially decrease the elimination rate of Riluzole
      Yes that's what I thought - so am I barmy to assume that that is good in terms of reducing the stuff that causes motor neurone disease providing it doesn't screw up my liver?

      Best of all

      Andy
      Warmly


      Andy

      ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

      "Things turn out the best for people who make the best of the way things turn out"

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        #18
        Hi John

        Originally posted by JAY TEE View Post
        Always take half hour before breakfast
        Interesting - I've got used to waiting an hour after I take Riluzole before I eat anything, and waiting two hours after I eat anything before I take it, per the guidance

        Warmly

        Andy
        Warmly


        Andy

        ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

        "Things turn out the best for people who make the best of the way things turn out"

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          #19
          Thanks Ellie and everyone else for their comments. I don't like coffee so that isn't my problem. I have a couple of mugs of tea per day. Would you think the smaller amount of caffeine in that be a problem? Thanks. Lynne
          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

          I'm staying positive and taking each day as it comes.

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            #20
            Lynne, I'd say at least 90% of us on Riluzole, who can drink safely, consume caffeine, be it in tea, coffee, cola or other sources, and have done so since Riluzole came onto the market.


            I take a pragmatic view of living with my ALS/MND - you know what, it's my weak respiratory muscles which will kill me, not the chance that an indeterminate amount of caffeine may delay elimination of Riluzole from my body.

            Day-to-day life with an MND is difficult enough, so I, for one, won't be giving up my daily mug of fresh coffee !! (which is a good laxative)

            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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              #21
              I was prescribed Riluzole when I was diagnosed 19 months ago. Blood tests seem OK and there are no other obvious side effects.

              Wine - drinking it, teaching about it - remains a major hobby that I continue with. A modest amount of alcohol seems to have a relaxing effect, not surprisingly!

              Doug

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