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    Rizole

    I’m going away to Florence and I want to know if coming of the rizole will affect me !! I like to a drink xxx

    #2
    Riluzole is a medicine you can stop without tapering but you should tell the prescribing Doctor that you're stopping taking it.

    Enjoy Florence, my favourite Italian city! 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
      Love Florence 💖💖💖
      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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        #4
        Tracywheadon69 May I please ask why you are coming off Rilozole? Thanks

        Richard
        Richard

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          #5
          Stephen stopped and seems less tired and anxious. But think everyone is different.
          when i can think of something profound i will update this.

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            #6
            I drink on riluzole. Wasn't advised not to but I am aware it can raise liver alt. I don't go mad just 1 night a week.
            Diagnosed May 2021 bulbar onset als.

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              #7
              I gave it up ages ago. No difference noted. I gave it up as I don't want to extend the life I have now.
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                #8
                I have been taking it for a month so have a blood test booked for next Wednesday.
                It's all funny

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                  #9
                  It was mentioned like a throw away comment, Albert barely noticed it said - but now says he wouldn't want it anyhow if this is all they have to offer after years of research hes not bothering!
                  Husband Albert diagnosed PMA Feb 21

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                    #10
                    They don't know what causes it, they don't know why it causes it. How then can they find a way to stop it? Just saying.
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                      #11
                      Same here Shelly. Friday is my G&T day x 1 plus I may have 1 glass of wine if feeling totally fed up. Every time my bloods rise re. liver count but frightened if I stop Riluzole altogether it will hasten other symptoms (just vocal issues at the moment but getting worse).

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                        #12
                        Having a glass of red....riluzole or not....has a benefit of at least chilling out....out weighs any risk IMO🍷cheers
                        Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                          #13
                          i agree. its not like riluzole seems to make that much difference.
                          when i can think of something profound i will update this.

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                            #14
                            Worsleybird I am the same re rising liver alt. I've read another on it so I've added turmeric & milk thistle to my vodka 🤣

                            Just kidding re the vodka.
                            I want stay on riluzole but on reading other members comments I know its always a possibility that they might stop prescribing.
                            Diagnosed May 2021 bulbar onset als.

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                              #15
                              Hi Shelly, a friend from me some milk thistle tea back from the Czech Republic. When I asked my consultant was it ok to take he said it wasnt recommended so I ended up not taking it as it wasnt a proven remedy for liver issues apparently! Its a bit like someone with lung cancer continuing to smoke after the diagnosis - I never understood why and now I do xx

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