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Sjogrens Topics => Living With Sjogren's => Topic started by: Maria3667 on June 17, 2017, 04:16:23 AM

Title: So what's your best treatment for dry mouth?
Post by: Maria3667 on June 17, 2017, 04:16:23 AM
Hi everyone,

Even though I've managed to curb some of my oral dryness, there's room for improvement. Just curious to learn what others use to combat parched mouth.

I currently find low dose testosterone and dhea work best in combination with pilocarpine (Salagen).

Kind regards.
Maria
Title: Re: So what's your best treatment for dry mouth?
Post by: katie1111 on June 17, 2017, 06:12:11 AM
Biotene toothpaste and mouthwash, MedActive oral relief lozenges (available from Amazon)

Katie 11
Title: Re: So what's your best treatment for dry mouth?
Post by: cccourt1942 on June 17, 2017, 09:02:28 AM
I am on 25mg of pilocarpine each day.  10mg in the a.m, 7.5mg mid afternoon,, 7.5mg at about 8 or 9.  I keep Xylimelts w' me, seldom use it, and I use Biotene gel when I have what you call parched mouth.  Certain foods (usually too much salt added) can dry me out instantaneously.  I sip of water and coat my oral cavity with biotene relieves that feel.   Mostly I avoid any food which dries me out.  Also, I avoid nasal sprays and antihistamines like they are poison.  Sometimes we have to take them...but I certainly don't like it.  I don't use those other products mentioned...as I consider them for what I term "normal" dry mouth issues.  Ours is systemic.  Calls for the big guns! 

btw: my rheumy has stated I cannot take anymore pilo per day.  That is, I a at my maximum.  :(
Title: Re: So what's your best treatment for dry mouth?
Post by: WhatYouSjo on June 17, 2017, 03:14:09 PM
I've found Ubiquinol (200mg/day) to be helpful. I have a humidifier next to my bed, chew Xylitol gum occassionally, and drink lots of water.
Title: Re: So what's your best treatment for dry mouth?
Post by: Sharon on June 18, 2017, 04:21:33 PM
1- Ubiquinol 200mg before sleep (with Omega 3 pill for absorbtion)

2- I use Pilocarpine eye drops as a mouthwash by swishing a few drops around in my mouth.
This stimulates saliva flow.
I do this since I can't tolerate the Salagen pills (plus the eye drops are much cheaper).
Title: Re: So what's your best treatment for dry mouth?
Post by: Joe S. on June 18, 2017, 04:42:15 PM
Sip,Swish,Swallow water.
Title: Re: So what's your best treatment for dry mouth?
Post by: Kathy57 on June 19, 2017, 05:57:09 PM
I use generic Evoxac three times daily - the maximum dose I can take.  Pilocarpine (the maximum dose) seemed like just a minimum of relief to me.  Evoxac works better, but I am still dry in between doses.  Some days are worse than others.

I also use Xyelomelts at night while I am sleeping - one on each side of my mouth.  I sip lots of fluids, chew sugarless gum, and occasionally suck on sugarless hard candy.

It's always a struggle😔. 

Kathy
Title: Re: So what's your best treatment for dry mouth?
Post by: Kristian on June 19, 2017, 06:53:46 PM
I use exovac too, pilocarpine didn't do anything for me in comparison.

My doc found a phenomenal prescription spray called aquaoral that actually stimulates saliva production and has a lubricating effect.

I also use biotene spray during the day and biotene gel at night.  The exotic made a huge difference in quality of life for me..

Keep trying until you find what works :-)
Title: Re: So what's your best treatment for dry mouth?
Post by: jkcc2323 on June 20, 2017, 06:24:55 AM
Quote from: Sharon on June 18, 2017, 04:21:33 PM
1- Ubiquinol 200mg before sleep (with Omega 3 pill for absorbtion)

2- I use Pilocarpine eye drops as a mouthwash by swishing a few drops around in my mouth.
This stimulates saliva flow.
I do this since I can't tolerate the Salagen pills (plus the eye drops are much cheaper).

Very interesting about the ubiquinol. I wonder if it plays a role in helping with dry mouth? There is research on CoQ10 helping with periodontal disease - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2991687/

One note about ubiquinol and CoQ10 for those interested. Regular CoQ10/ubiquinol is poorly absorbed by the body, but studies show that a water and fat-soluble form is better absorbed and leads to higher plasma levels.

https://www.ncbi.nlm.nih.gov/pubmed/?term=Plasma+coenzyme+Q10+response+to+oral+ingestion+of+coenzyme+Q10+formulation
Title: Re: So what's your best treatment for dry mouth?
Post by: araminta on June 21, 2017, 04:20:30 AM
Dry mouth is not my worst symptom, it seems to come and go a bit during the day, and is worse at night.   Sugar-free chewing gum has been the best thing for me.   Biotene mouth gel gave me some kind of allergic reaction.   I avoid very dry food.
Title: Re: So what's your best treatment for dry mouth?
Post by: Nymph on June 22, 2017, 04:19:07 PM
N-acetyl cysteine
Title: Re: So what's your best treatment for dry mouth?
Post by: Maria3667 on June 26, 2017, 02:38:56 PM
Hi everyone,

Thanks for your replies - hopefully they are useful to others seeking a remedy too.

I've tried most things mentioned, but unfortunately Evoxac is not available in my country. I still take pilocarpine but like cccourt1942 I find it's becoming less effective over time.

@Nymph: yes, N-acetyl cysteine worked for me too, but caused weight gain. Have you noticed this side effect too?
@Katie1111: MedActive oral relief lozenges sound promissing, are they expensive & how many do you take?

By the way, I'm trying "slippery elm" at the moment. When taken simultaneously with Pilocarpine it causes a little saliva flood - but I'm bracing myself for the side effects, which will usually either be constipation/weight gain/depression - or all of them at once  :( :o
Title: Re: So what's your best treatment for dry mouth?
Post by: Nymph on June 29, 2017, 06:34:03 PM
Hi Maria. No, I am underweight and have not found anything that makes me gain!  :P
Title: Re: So what's your best treatment for dry mouth?
Post by: Maria3667 on July 01, 2017, 06:44:41 AM
Hi Nymph,

Wish that would be one of my side effects but I always seem to get the opposite. Even though I can imagine being underweight comes with its own set of problems ...

Take care !

Title: Re: So what's your best treatment for dry mouth?
Post by: DP on July 09, 2017, 04:36:52 PM
I take ubiquinol, drink lots of water, and try not to take antihistamines too often (for sleep).

I recently switched to ACT Dry Mouth toothpaste and finally my gums have stopped bleeding every morning & night when I brush my teeth! And it really is a soothing mild minty flavor, not harsh & drying like regular toothpaste.

Dawn
Title: Re: So what's your best treatment for dry mouth?
Post by: jkcc2323 on July 10, 2017, 09:17:54 AM
Quote from: DP on July 09, 2017, 04:36:52 PM
I take ubiquinol, drink lots of water, and try not to take antihistamines too often (for sleep).

I recently switched to ACT Dry Mouth toothpaste and finally my gums have stopped bleeding every morning & night when I brush my teeth! And it really is a soothing mild minty flavor, not harsh & drying like regular toothpaste.

Dawn

Thanks for sharing the tips!

There is research on CoQ10/ubiquinol for gum disease, so it does make sense that it could help: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2991687/

It seems to be related to lowering inflammation. What brand do you use?
Title: Re: So what's your best treatment for dry mouth?
Post by: A Mom on Spin on July 10, 2017, 06:13:50 PM
I use Biotene spray throughout the night and have also found that keeping my lips moist with Blistex Lip Medex helps during the day.  It's a small tub of menthol-based gel that I have found  stimulates saliva flow in me.  I tried CoQ10 Ubiquinol and it did not help me. I also had a problem with Xelomelts at night, as one dislodged and I almost aspirated it.

I can't say it enough, the menthol in Blistex Lip Medex is awesome!
Title: Re: So what's your best treatment for dry mouth?
Post by: Carolina on July 12, 2017, 07:12:32 AM
Pilocarpine is the key.

Keeping my nose clear for breathing is essential, as well.  I use saline nasal spray, followed by Nasocort.  I also take a generic mucinex, morning and night.  Then my nose is clear and my mucus is not gluey (well not SO gluey) and I can breathe through my nose.  Heaven help me if my nose is blocked.  My mouth then becomes a foreign object (think brillo pad).


I also take Ubiquinol, N-Acetyl Cysteine (for Meniere's per Otolaryngologist), Omega-3 (per Cardiologist) N-Acetyl Carnitine, Beta Carotene, Cistanche, and a host of other substances.  Too many to list.  Do they help with dry mouth?  I count on Pilocarpine, that I know.

I take antihistamines day and night for general rhinitis and 'allergy like' symptoms.

In all I take well over 30 tablets/pills a day, in addition to sprays and creams.   I'm a mess, 'tis true.

Hugs,  Elaine
Title: Re: So what's your best treatment for dry mouth?
Post by: Gorn on July 13, 2017, 05:44:09 PM
Thank you all this is helpful. Dry mouth was the last symptom to kick in, and it is just getting to the point where it bothers me every day.