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    #1

    Hyoscine patches

    Sorry more mucus discussions! After seeing a different consultant Dad has started trying hyoscine patches 1.5 mg, one patch for 72 hours. The first day seemed to show a bit of improvement but today has not been good at all.

    I assume the patches are designed to give the same level of medication through the 72 hours.

    I would be interested in anyone else's experience of using the patches. Did they help fairly quickly or take a while to work and did the effect wear off over the 72 hours?

    Many thanks!
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    #2
    Claireflo For me, the patch worked the same at reducing my saliva production for the 3 days it was on.

    Is this day 2 for your dad? And when that today has not been good, did he have lots of saliva?

    I presume the patch isn't loose nor did it move. 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
      Yes it's day 2 and he's struggled with constant mucus/secretions throughout the day. Hasn't barely got out of bed :-(

      Patch is still on (I think my mum checked it earlier, I'm 2 hours away so have to rely on others for info)

      Comment

        #4
        Originally posted by Claireflo View Post
        he's struggled with constant mucus/secretions throughout the day.
        Hyoscine reduces saliva production so, it could end up making the secretions thicker as they're not being diluted by saliva - this is why managing secretions can be so difficult and why taking ~2 litres of water per day is good (if safe to do so for non-tubed people).

        If he has a mouthful of saliva, the dose is too low or hyoscine isn't for him.

        Either way, the prescribing doctor should probably be told - your dad must be utterly fed up...

        It must be hard for you trying to manage things from afar. xx
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
        ​

        Comment

          #5
          Thanks Ellie he's going to try another patch tomorrow and see how it goes. If its not helping i can ring the doctor/mnd coordinator on monday. Its helpful to know that it should work pretty quickly, some medications take a few days/weeks to get to a reasonable level to be effective.

          The remaining options seem to be altropine drops or botox.

          He is well and truly fed up. I wish something would work but at least if we try every possible option I can at least feel that I've done everything possible to help and sadly that's all I can do xx

          Comment

            #6
            Originally posted by Claireflo View Post
            The remaining options seem to be altropine drops or botox.
            Has he tried Glycopyrronium? 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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              #7
              He's on the max level of glycopyronium bromide x

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                #8
                Claireflo On 8mg of glyco per day and wearing a 1.5mg hyoscine patch, your dad is drooling/still has excess saliva? xx
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
                ​

                Comment

                  #9
                  He's on 3 x 10ml of glycopyronium bromide with each 5ml being 1mg so 6mg per day. He's been told that's the limit and he can't increase it anymore.

                  He's tried the patch again today but seems to have constant secretions so has stayed in bed again most of the day.

                  I can't understand why having the patch would make him have more secretions than normal. He is using the suction machine on and off throughout the day and tissues by the box to wipe away excess saliva :-(

                  I'll have to ring the MND Coordinator/ doctor tomorrow and ask about the dose and whether it can be increased. I'll ask about the botox option and if there's a wait time then I'll ask whether he can try the altropine drops in-between.

                  Comment

                    #10
                    Claireflo Oh, your poor father - perhaps Botox is next to try.

                    Maybe the max dose of glyco is age-related. 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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