Pilocarpine / Cevimeline for dry mouth - Cure Parkinson's

Cure Parkinson's

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Pilocarpine / Cevimeline for dry mouth

park_bear profile image
18 Replies

Parkinson's causes the GI tract to dry out from one end to the other. So I get dry mouth, pills are prone to getting stuck in my esophagus halfway down, and constipation. Stool softener (docusate) works great for the constipation. For the dry mouth I have a whole array of mouth moisteners and hard candies. Even so I sometimes end up with a sore tongue from lack of saliva.

The official use of pilocarpine is to trigger the production of saliva in cancer patients, however a doctor can prescribe it for PD if s/he sees fit. It works, but there are downsides: it is short acting and only lasts for a few hours. Also, if I take a bit too much I end up with a hot flash - a feeling of heat coupled with a cold sweat, particularly if taken before bed.. My sensitivity varies - sometimes the 5mg dose is right, sometimes I need to split the tiny 5 mg pill with a pill splitter. It's not perfect, but I do find it is helpful, and thought it was worth sharing.

Update: since posting this I have switched to Cevimeline which costs more but is less prone to the cold sweat side effect.

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18 Replies
Donzim profile image
Donzim

Three things great for constipation and gut: l-glutamine amino acid, glucomannon fiber caps and Digest RC (one of biggest sellers at Life Extension but available elsewhere). Each works differently so google them. Also Align caps and Activia yogurt are both excellent for probiotics. Align expensive but sold cheaper at Costco. No reason to use harsh chemicals.

park_bear profile image
park_bear in reply to Donzim

A stool softener is not a "harsh chemical" like many laxatives.

Donzim profile image
Donzim in reply to park_bear

Nevertheless it is a laxative. The other things I mentioned work differently, cbuilding health.

park_bear profile image
park_bear in reply to Donzim

NO. It is NOT a laxative. It adds moisture, counteracting the dryness.

zawy profile image
zawy

Doesn't Parkinson's cause excessive saliva?

christymw profile image
christymw in reply to zawy

I think a side effect of many of the medications is dry mouth.

park_bear profile image
park_bear in reply to christymw

Yes, some medications. Amantadine gave me terribly worse dry mouth. That said, stopping Azilect/rasagiline made no difference. Nor did cutting back on my only other med, carbidopa/levodopa.

park_bear profile image
park_bear in reply to zawy

content.iospress.com/articl...

"We studied 97 PD patients and 86 controls using a structured questionnaire. Dry mouth was reported by 60.8% of PD patients and 27.9% of controls (p < 0.0001). Dry mouth and drooling coexisted in 30% of cases. Only 12% of patients had reported dry mouth to their physicians. Dry mouth is a frequent but underreported symptom and may be an early manifestation of autonomic involvement in PD."

Beats me how drooling and dry mouth can co-exist, but there it is.

Mulberry4355 profile image
Mulberry4355 in reply to park_bear

Drooling and dry mouth is exactly the reaction of a poisoned animal! To stop it from swallowing any further poison and to regurgitate what has already been swallowed! The can be observed by cats and dogs eating grass.

park_bear profile image
park_bear in reply to Mulberry4355

Nope. The reaction to poison is vomiting

lark13 profile image
lark13

I've also had very bad dry mouth. Wondering if that's why I have had so many problems lately with sore tongue.

park_bear profile image
park_bear

Exactly. Turns out the tongue needs the good things saliva provides in order to stay healthy. Hard candies can be used to trigger saliva production as well as the pilocarpine. None of the sugar substitutes in the sugarless types work for me so I am using Zand lozenges. "Stoppers" dry mouth spray has some of the enzymes found in saliva. Dry mouth relief" from Swanson likewise. I have both but can't say how well they work cause I am using many things.

Bottom line is you have to do as much as necessary to moisturize that mouth cause sore tongue really occupies your attention if it gets unhappy.

Mulberry4355 profile image
Mulberry4355 in reply to park_bear

Ignoring what your body is trying to tell you also gives you a dry mouth. Giving the body a dose of sugar is adding to the problem

park_bear profile image
park_bear in reply to Mulberry4355

Agree that sugar is not good. Since that post I have found non-sugar means of promoting saliva.

Do tell - what is my body trying to tell me?

SilentEchoes profile image
SilentEchoes

My tongue stuck to the roof of my mouth while I was sleeping, I woke up suffocating; has this happened to you or anyone else out there?

park_bear profile image
park_bear in reply to SilentEchoes

I have not suffered that particular misadventure, but I do keep lozenges at easy reach by the bedside if my mouth feels dry.

silvestrov profile image
silvestrov

I just stumbled on this information and think you may like it.

drymouthclinic.com.au/artic...

clinicaltrials.gov/ct2/show...

park_bear profile image
park_bear in reply to silvestrov

Interesting. Thanks for thinking of me.

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