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
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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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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. NIV overnight. Generally weak. Mostly terrified.Comment
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Stephen stopped and seems less tired and anxious. But think everyone is different.when i can think of something profound i will update this.Comment
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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.Comment
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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 🤗😘🤗😁xxComment
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I have been taking it for a month so have a blood test booked for next Wednesday.It's all funnyComment
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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 21Comment
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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 🤗😘🤗😁xxComment
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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).Comment
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Having a glass of red....riluzole or not....has a benefit of at least chilling out....out weighs any risk IMO🍷cheersInitial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.Comment
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i agree. its not like riluzole seems to make that much difference.when i can think of something profound i will update this.Comment
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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.Comment
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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 xxComment
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