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Sjögren's Syndrome Message Board
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Old 03-24-2010, 09:36 AM   #1
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sandshore HB User
Reduced Saliva, Dry Mouth Questions

Hi,

I was just diagnosed with Hashimoto's about a month ago. I think I have Sjogren's because of extreme dry mouth and stinging eyes and some other symptoms. My ANA (anti-nuclear AB) was elevated 1:160. (I have been on Levothroid and noticed increased Sjorgren's like symptoms, since going on that (my only) medication. However, dry mouth is not a side effect of Levothroid or T-4 hormone medication (that I can find mentioned anywhere)

For almost the past two weeks my mouth has become very dry at night. It has been fairly moist during the day. Starting yesterday, however, I noticed a change--reduced saliva production while awake. This morning it was even worse (my tongue felt so big in my mouth). I'm freaking out a bit and have an appointment with a rheumatologist.

Questions about dry mouth and Sjogrens. Will it progress so that there will be no saliva at all in my mouth?

If that is the case, how does one eat, swallow and talk?

What is the quality of life regarding this?

Does it (the dry mouth) have flare ups where it comes and goes?

I am using some biotene products, but as saliva glands decrease by 80% the biotene products are not as helpful.

Thank you very much for any feedback. I, for the life of me, don't know how someone could eat (let alone ever enjoy food) if there is no saliva.

"Sandshore"

 
Old 03-24-2010, 12:58 PM   #2
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Mari526 HB User
Re: Reduced Saliva, Dry Mouth Questions

Actually, dry mouth is associated with Hashimoto's too. Make sure you're drinking plenty of fluids and rinse your mouth often with water.
You might try hard candies to help stimulate saliva production.

 
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Old 03-24-2010, 03:26 PM   #3
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Re: Reduced Saliva, Dry Mouth Questions

Hi Mari526,

That's interesting information. I'll do some reading/research on this.
I'm not optimistic though. My TSH was high and I've been undiagnosed Hashimoto's, I think, for a year minimum. Now I'm getting treatment and the dry mouth is SEVERE.

Also last year I had symptoms of the back of my throat being dry. I would love it not to be Sjogren's, but I think, unfortunately, I belong to this club.

I want to ask another question about some favorite coping medicines/lozenges etc. for dry mouth. It might need a new thread--so I'll start one.

Sandshore

 
Old 03-24-2010, 03:59 PM   #4
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Re: Reduced Saliva, Dry Mouth Questions

Mari,
I did a bit of research on the web. Someone else asked about the connection between Hashimoto's and dry mouth. This is from Ask the Expert, an Internist (Fred Finkelman) from the University of Cinncinatti



"Although . . .severe hypothyroidism can be associated with a thick tongue and dry mouth, the relatively mild hypothyroidism that you probably have (judging from your mildly elevated TSH) probably does not account for these symptoms by itself. A rheumatologist would probably be the specialist who is best trained to look at the additional possibilities. There is no cure for Sjogren`s syndrome, but there are therapies that can help with some of the problems."

Sandshore

 
Old 03-29-2010, 01:34 PM   #5
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Re: Reduced Saliva, Dry Mouth Questions

go to your ENT dr. and have him prescribe pilocarpine.
This will make you sweat and may feel cold or hot.
The sweating in turn may make your saliva glands work.
For my wife, unfortuately, nothing works after radiation treatments
around her face/neck. Radiation burnt her glands.

 
Old 03-30-2010, 06:40 AM   #6
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Re: Reduced Saliva, Dry Mouth Questions

try as mentioned yesterday......Salogen(?) pilocarpine by Rx, Oasis, Numiosyn(?), you may also need a product called MagicWash if you get sores in your mouth, try non-sugared citrus candies. Mouth should be kept miost because it can lead to tooth loss.

 
Old 03-31-2010, 09:42 AM   #7
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Re: Reduced Saliva, Dry Mouth Questions

Hi Hoyasaw,

I have not had to have radiation treatment as your wife has. I hope she has at least some saliva left to work with.

I have read about the pilocarpine. It has some side effects regarding vision and is not recommended for those with asthma. It's a systemic drug (similar to Sjogren's). Instead I'm chewing biotene gum. (the trident cinnamon gum burned my mouth)

Right now I'm trying to find a good dentist. I'm extremely concerned about my teeth and the damage from this.

I live in California and there is not a sjogren's support group near where I live, but there is one I can drive to (which meets four times a year).
It's run or sponsored by a dentist who has dry mouth and I plan to go in a couple weeks.

Sandshore

 
Old 03-31-2010, 09:44 AM   #8
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Re: Reduced Saliva, Dry Mouth Questions

Thanks, Hoyasaw. I will try some of those other suggestions and keep you all posted.

Sandshore

 
Old 04-01-2010, 05:09 PM   #9
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Thumbs up Re: Reduced Saliva, Dry Mouth Questions

My wife has dry mouth from radiation treatments around her neck (phrangeal lymphoma). The treatments dried her salivary glands, so we think.
We went to a new ENT today, April 1, and got some new advise. She was told to drink water with a little salt (a pinch), mix it with a little lemon juice to hide the salt taste and you can also mix some bitters, too. Some pepper may work. You may not be hydrated enough. Sip the water, do not drink. I do not know if Gatorade will work. The idea also is to protect your teeth. Citrus candies with ONLY xylotol or similar artificial sweetners NO REAL SUGAR. See your ENT dr. and also you may consider an oral pathologist. If your tongue is white in appearance and dry lips, you need to sip lots of water
There is no time frame for the water. It could be a week, month, or a year. Hopefully, this will work. We are starting it, also.

 
Old 04-02-2010, 07:17 AM   #10
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Re: Reduced Saliva, Dry Mouth Questions

Hi Hoyasaw,

I am being very pro active about hydrating myself. I work to get several cups of water in. Thanks for that info about what to look for regarding one's lips when they're dehydrated.

I started using something for dry mouth which you might want to look into for your wife.
I consulted with my dentist yesterday. He gave me a product called "Carifree" oral neutralizer gel. It is actually sitting in my mouth right now as I type this.

He told me he only wants me to use only this "toothpaste" right now. Its intent is to keep the PH in the mouth neutral (rather than acidic). It's also supposed to relieve dry mouth. It gives my mouth a more normal healthy feel to it, very soothing. I used it last night in the middle of the night--just holding the foam in my mouth as long as I want.
Today I plan to use it throuhgout the day.

(He also is having me rinse with their "Anticavity maintenance rinse" which has flouride once (or twice; I forgot his recommendation) a day.

Sandshore.

Last edited by moderator2; 04-02-2010 at 02:42 PM. Reason: please do not post websites except as described in the Posting Policy

 
Old 04-02-2010, 10:21 AM   #11
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Re: Reduced Saliva, Dry Mouth Questions

Hi,
I just want to amend my post that I just wrote about the "Carifree" products.
I used the flouride mouthwash a second time this morning. It starts to burn my tongue (a somewhat mild burning sensation). I will change out my flouride rinse to another one.

However, the "Carifree Oral Neutralizing Gel" is one of the best products that I have used for dry mouth. I highly recommend it. What I like about it is that it changes the PH to the correct healthy PH and there is just this very nice normal feeling in my mouth--which lasts for awhile. (Some other products I've tried don't have much of a carry over after using them)


Sandshore

 
Old 04-02-2010, 10:51 AM   #12
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Re: Reduced Saliva, Dry Mouth Questions

More information on Carifree. I just called their company. (800-503-0625)

They make two mouthwashes. The one I'm using is alcohol free of course, but it has "menthol" which is probably too strong for me. They have a lemon which I'm going to try.

They have three products which work for dry mouth (the gel, mouthwash and a spray).
The goal with using these products is to keep the PH above 5.5.
When the PH gets low (becomes acidic) then the acid has free reign. That's when we get decay and lose our teeth. (When I was talking to my dentist about it, he explained the the decay for Sjogrens is often in a different area from the cavities one gets as a child. For Sjogren's, it's toward the bottom of the teeth and the gum line.)

All three of the products will help maintain that healthy PH balance.

The dentist told me to "only" use this toothpaste. I will keep using all of these products to maintain the PH. (Cari's rep said even the mint spray they sell, which I've also used and had no problems with, will help maintain that PH.)

He also told me that some people have a "special appliance" made and they put the gel in and wear this at night. He said it's safe to swallow the gel.

That sounds like a very good option.

I hope this helps. I am posting on the end of a long thread. I hope that people will see my research and it will help them if they have similar problems.

Sandshore

 
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