I notice that during the wearing off times, and upon waking up in the mornings, the consistency of my saliva changes to thick and stretchy mucus with a salty taste. It normalizes after I take my next dose and brushing my tongue and teeth , but still returns with the next off time. It leaves me exasperated !
I was diagnosed with PD since 4 years and I take Mucuna capsules, Carbidopa Levodopa 4x daily and my neurologist recently added Entacapone to my regimen but nothing has helped this nasty symptom.
Any suggestions will be appreciated.
Maddie
Written by
Vitality1
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Hi Maddie - you contacted 72andnotout re: entacapone. He is my husband and hasn't been on here much - has asked me to reply to you. He was on entacapone for over 6 years and in the end our new neuro listened and saw how he was and he and our GP and me nutted out how to get him off it without too much drama. He was put on it by the previous neuro when he did not need it - he ended up with twisting hands and feet - very unstable on his feet - couldn't stand straight and had 3 falls and busted ribs (1) and spent 4 days in hospital with concussion (1) and the other one I dealt with at home. He was aggressive, demanding and paranoid - it appeared that PD was progressing fast -he also ended up with prostrate problems - not able to sleep more than 3 hours per night - the manufacturer stated quite clearly be careful with dosage when given to PD patients eg keep the dosage low until the right dose was found. He gave him 75mg SR per day when it should have been in increments of 25mg instant. Obviously being female prostrate is the one thing that will not affect you. It took 3 months to get him off it - you can't just stop after you have been on it a long time and depends on dosage as well. After 4 months I had my husband back to normal with PD - he has actually reduced his Madopar from 125mg + 62.5mg x 4.5 hourly to 125mg x 4.5 hourly with CBD at night and sleeps like a baby for 6-8 hours a night.
We are going to see his neuro on Friday 8/11 - he hasn't seen him for over a year now and he is going to get a shock when he sees him this time - the most obvious thing he will see will be the tremors and no stuttering and struggling to talk now and stepping it out like he is a man on a mission.
Everyone is different and react differently to these drugs - same as no two people with PD are the same and you may do well on entacapone - all you can do is try it if you need it but be aware that things may change with you that could concern you and your neuro as well as you GP needs to listen to any concerns that you may have with your meds.
Hope I haven't scared the pants off you Maddie - my handle on this forum is shaken-not-stirred.
All the best my dear in your journey and don't hesitate to chat with me if you need a sounding board to let your hair down with - thoughts Carole.
I forgot what you said about your saliva being thick and nasty - hubby uses Oral 7 for dry mouth which helps with this - he mainly uses it at night. Biotene also make a dry mouth relief - not sure what you can get where you are - we are in Australia.
Hope you can find something where you are as I know what you are going thru.
try Ambroxol . If you search “ambroxol and Parkinsons” you will find some interesting information on this decongestant. It breaks up the protein clumps responsible for the thickened mucus and I believe Parkinson's in general. It’s under testing now - stage three, Give it a try!
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