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    Hyoscine patches

    Hi all. I wonder what fellow sufferers’ experiences are of Hyoscine in patch form. Is it supposed to make a difference to excessive salivation immediately, or does it take a while before an improvement is felt ?
    I’ve only just started using them 6 days ago, and can’t say I’ve seen any improvement yet. Am I just being impatient ? I’d appreciate your views.
    love, Lizzie

    #2
    You should have noticed a reduction in saliva production by now if the patches were going to work for you Lizzie. You're just finished your 2nd patch now on Day 6, are you using half or full patches?

    Hyoscine is not effective for everyone, including for some forum members, it does tend to be the usual first drug offered, if it doesn't work for you, ask for an alternative. 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 for your response Ellie. I’m on the full patch therefore did expect to see some improvement. I’ ll give it another few days, and if there is no change I will get in touch with my GP. Thanks again xx

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        #4
        I have used patches off and on but not convinced they are that effective. None of the other treatments such as Glyco and Atropine worked for me. Last week my excellent palliative consultant suggested one and a half and take the whole patch off at night to prevent very dry mouth. I actually use biotene gel or X..Melts to avoid dry mouth at night which do work.

        I had radiotherapy last year to zap some saliva glands. That worked for about 4 months and then weakened lip muscles have made saliva management difficult again but I think it would be worse without the radiotherapy. Have been considering Botox but have parked that idea for now.

        If anyone has found a different successful answer, please post it.
        Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

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          #5
          I use fresh apple and mango juice and it works very well. It is not totally effective but then nothing is Lizzie.

          I only need a beaker for 6 hours or so.
          Copyright Graham

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            #6
            After trying everything including radiotherapy I have settled for Bromide. Old fashioned but works.👍😁xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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              #7
              Is that glycopyrronium bromide Matthew?
              Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

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                #8
                It certainly is and I'm never without it in my medicine cupboard 🤗😁👍😄xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                  #9
                  John D I also take glycopyrronium, have done for some years. I take 2mg, 2x daily with great results.

                  As I said, not every medicine will suit, or be effective for everybody, and landing on the right dose is often trial and error. 😏 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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                    #10
                    I take 13ml 5 x a day and it does the trick. 😁👍😄😘xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                      #11
                      There's a good example how doses can vary - 4mg of glycopyrronium is my daily dose, 13mg is Matthew's daily dose.
                      ​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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                        #12
                        I may be wasting away but I'm still a big bugger! 😄😁😆😂xx
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                          #13
                          Is it 13 a day or 65, Matthew? If 65, that’s a heck of a lot!
                          Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

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                            #14
                            13ml taken five times a day unless my mouth is Uber dry then I leave it out. I have 20ml of Baclofen 5 x too. 👍😄😁🙏xx
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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