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    Carbocisteine syrup

    My husband Andy is now 5 years + down the line with ALS. Things are certainly getting very tricky now. Please can anyone help…. He has had an emergency prescription from the MND coordinator via Community Matron to the GP for some Carbocisteine. Really struggling with thick, stringy phlegm for a while but it has suddenly escalated. Pineapple juice and drops not helping. Only relief is wearing his NIV. Have managed to get the Carbocisteine syrup this evening from the local hospital but no one seems sure if it can be taken via his RIG. I’ve just syringed 15ml into his mouth (between gums and teeth very slowly) and it seems to have worked to thin things down. Taking things orally really isn’t ideal though. Is anyone else taking it via a RIG or PEG? Does it work? Am hoping GP will come up with the answer tomorrow but suddenly realised I should be asking the experts!!!!!! Thanks for helping if you can….. x

    #2
    AngelaR Yes, it can go down the feeding tube. 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
      Thank you Ellie, that’s such a relief! Sleep well if you can everyone xx

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        #4
        Hi AngelaR
        my partner has 15ml down his peg three times a day.

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          #5
          Thank you for your help. It seemed to help well even after the first dose but now he has constant cough/rattle and upset tummy. Am hoping things will calm down again soon x

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            #6
            Hi AngelaR my dad has a lot of issues with thick stringy phlegm. He takes carbocisteine through his tube. I hope it works well for your husband and any initial side effects settle down.

            Has he got a cough assist machine? Many people find that helpful for managing mucus so if not it's worth getting a review with the Respiratory consultant.

            Other options that may be worth looking at are a suction machine (dad got one through his community physio) and a nebuliser with hypertonic saline solution which dad got through his gp.

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              #7
              Thanks @claireflo…. Yes we have a suction machine which has been in continual use this last month or so. Andy still has a reasonable ‘cough’so not needing to use the assist machine too much yet. The thick phlegm was really getting him down though and I know it’s early days but he’s seemed much better today after taking the Carbocisteine. Fingers crossed it continues to help and gives him a bit of respite. He’s now been prescribed the Hyocine patch as they are worried the thinner phlegm and saliva will be more prolific and need to be addressed. I’ve read varying reports on the effect of Hyocine so will proceed with caution I think! Unfortunately a lot of things seemed to have deteriorated at the same time so it’s taking a bit of readjusting. Hopefully things will plateau again soon and life will be a bit easier again for a while……. We will see how that plan goes! X

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                #8
                The respiratory team are coming for a review and I’ll ask about the nebuliser in the morning, thanks!

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                  #9
                  AngelaR hope the Respiratory team can help xx

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                    #10
                    AngelaR i hope the carbocisteine contines to help. I'd be interested in how your husband gets on with the hyocine patch, my dad has been put off that abd the drops as they've been described as 'the last resort'.

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                      #11
                      @claireflo…. So far so good! Early days I know but using just half a Hyocine patch placed behind his ear seems to be helping a lot. It has helped to dry up the now less thick phlegm but hasn’t dried his mouth out too much which is what we feared. Like you we were told to use it as a last resort as many people don’t get in with it but I’m afraid we’ve reached that stage: Andy really was in a terrible state with Phlegm etc. and we have tried for about 6 months to manage things without medication. The negatives have been an upset tummy, feeling very tired (even more than usual) and a bit sickly but the positives very much out way these. The drops didn’t seem to work very well at all. We will continue with just half a patch for now. 🤞things continue to settle. Sadly Andy is now getting quite a lot of pain, especially at night, so next challenge is finding something to help with that. The hospital bed and Quattro Air Mattress have been good for a while but now he can’t sleep longer than an hour and a half without getting v uncomfortable and needing turning. Just trying a slow release paracetamol patch as the tablets down his RIG only work for a relatively short time, Never mind…. we are still here nearly 6 years down the line so we will soldier on! Happy Christmas 🎄 xxx

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                        #12
                        AngelaR thanks so much for the update and it's good to hear that the patches and carbocisteine seem to be helping.

                        We've tried everything else and dad's day revolves around trying to clear thick phlegm for many hours including early in the morning so it's affecting his sleeping and is just very unpleasant. Hopefully we'll have another appointment in a month or so and Dad can at least try the patches.

                        Sorry to hear that your husband is experiencing some pain, hope the slow release paracetamol can help. My dad has bulbar onset so we're only now (19 months post diagnosis, 31 months after first signs) dealing with physical effects. He has significant weakness in his right arm and hand, I anticipate that independent use of the feeding tube won't be possible for much longer and dressing is increasingly difficult. He is still managing and still mobile so thankful for that.

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                          #13
                          Originally posted by AngelaR View Post
                          The hospital bed and Quattro Air Mattress have been good for a while but now he can’t sleep longer than an hour and a half without getting v uncomfortable and needing turning.
                          Sorry to hear this Angela - there a few different Quattro mattresses so perhaps Andy needs a higher dependency mattress.

                          What pain is waking him up?

                          Presumably you've tried changing the settings to see if that improved things - 'Active' mode on different levels of firmness, although there seems to be only 3 levels of firmness on a Quattro, which isn't a lot.

                          I'd try addressing the cause of the pain rather than the pain itself so, once the Christmas madness is over, you could contact whoever organised Andy's mattress to find a solution.

                          Best wishes 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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