Saliva Problems

[KW1]

Hi, my name is Tina and my sister was diagnosed with bulbar onset ALS in May 2021, the actual diagnosis at that time was PLS but this was reassessed and changed later in the year as progression was so fast. She now cannot move independently, is peg fed and communicates via eye-gaze. One of the most upsetting things for her is having no lip seal and excessive saliva which thickens as the day goes on. She has had three rounds of Botox, tried pineapple juice (which induced diarrhoea) and has recently attended a saliva clinic where she was prescribed Carbosisteine and has been taking 750 mcg 3 times per day for three weeks. She uses a suction machine all day but this is becoming increasingly difficult for her due to the declining functionality of her hands.

If anyone has any suggestions or has treatments / medication that has helped, we would be very grateful. X

[Claireflo]

Hi KW1 sorry to hear about your sisters diagnosis and difficulties. Secretion management seems to be quite a difficult issue and quite unpleasant for the person suffering with it.

My dad suffers considerably and the advice we have had includes:
Maintain hydration (1.5 litres a day)
Pineapple juice (which you've mentioned)
Carbocisteine (which you've mentioned)
Glycopyrronium Bromide (helps with excess thin saliva, we've been advised it can help with thick saliva and we've also been advised it can make it worse. Dad trialled stopping it and the thin saliva was so bad he restarted it)
Suction which you've mentioned
Cough assist machine - physio helped with a referral to the Non-invasive ventilatuon clinic who.provided this to help him cough to clear the mucus due to his muscles becoming weaker
Nebuliser - 0.9 saline solution then 3% hyper tonic saline solution (this was increased further for my dad).

I've seen mention.if Erdosteine and NACSYS but the consultant won't prescribe them for my dad so I don't know any more about them.

I've also heard that diary can affect mucus. We tried altering dad's feed (PEG) to a soya based feed but it didn't resolve the isuue and wasn't well tolerated.

I hope you have more success in finding something that helps than we have.

[KW1]

Thanks Claireflo. She uses a nebuliser before bed but just saline I think (I’ll check). Not heard about the G Bromide or Erdostein but will check. She’s going to recommence pineapple juice, just not as much. It seems to me that everyone is different and it may be trial and error to see what works or even just improves it.

[Ellie]

... she was prescribed Carbosisteine and has been taking 750 mcg 3 times per day for three weeks.

750mcg, 3x day, is a tiny, tiny starting dose for an adult - it's def mcg, not mg?

Glycopyronnium bromide will decrease saliva in a lot of people, when the correct dose is given - my saliva is managed on 2mg, 2x daily - a consequence of not swallowing a normal amount of saliva is that other secretions can get thick and sticky, and cause all types of issues. That is why secretion management is a tricky business...

There are several meds which reduce saliva production, apart from Glyco.

As mentioned above, good old water can play a significat role in thinning secretions - my minimum intake is 1800ml, in warm weather that goes up by 1000ml.

Hope she finds a solution xx

[John D]

I would add Hyoscine patches to the list of meds which work for me upto a point.

KW1 I have the same lip seal problem.

My dietician has recommended 2,500 ml of water per day plus another 1,000 during really hot weather which I take through my PEG but don’t often manage to drink all of it.

[KW1]

Thanks for all your suggestions and sharing your experiences, it is really appreciated and we now have some info we didn’t know. And yes Ellie - I think I have mcg’s and mg’s confused 🫤. Tina x