How to deal with dry mouth

[Michael1234]

Hello all, I am new to forum and I am looking for advice. I recently developed extreme dry mouth. My Dr's suspected Sjorgen, but my  antibody blood  test came back negative.  The dry mouth seems to be increasing.  My question is based on anyone's experience, does the dry mouth stabilize , ever pull back. Also, how do u cope with this new constant dry mouth sensation, do you get use to it.. any advice would be appreciated. Thanks Mike.

[A66eyroad]

Welcome, Michael1234! I'm glad you found us, but sorry you had to look.

There are two prescriptions (that I know of) to help with dry moutn. I take the generic form of Evoxac, but there is also Pilocarpine. Perhaps you can take one or the other of these. (Pilocarpine didn't agree with me.)

I also use a wonderful lip balm by Nivea called "A Kiss of Smoothness" which comes in a blue tube. I get it at the local pharmacy. This keeps my lips from getting all peely. Chapstick seems to make my lips worse.

I drink ice water all day long, just sips and swishes. The icy cold water really helps with the burning sensation. I try not to do anything with sugar, but, like any Southern gal, I do love my iced tea.

I can't eat dry snacks such as chips or pretzels without lots of liquids.  Foods that have sauce are best for me, but I can't eat a lot of highly acidic foods like spaghetti. Also, anything spicy or overly minty is out -- peppermint gum, some Mexican stuff, although I have to admit that I sometimes eat what I shouldn't just because I want to, and da** the consequences! Especially jalapeno poppers and pickled ginger on my California rolls!

I also use a toothpaste called Biotene. It's sometimes hard to find -- I've learned that it's not with the other toothpastes, but rather, near the Anbesol and other mouth emergency items. I use a mouthwash called Oragel for Mouth Sores. This is especially great right before I go to bed and if I should wake up during the night. Caution: They've recently come out with a new flavor "now with pain relief" that is actually TERRIBLE for me. It's so spicy it makes my eyes water.

I get lots of mouth sores, too, and I've found that touching one with a Q-tip dipped in tea tree oil for about 30 seconds will get rid of one overnight, or, at most, in two days. I've started brushing with a couple of drops of tea tree oil on my toothbrush after my regular brushing, and this has significantly ramped down the incidences of sores. My dentist has written me a prescription for a concoction called Mary's Magic Mouthwash that the pharmacy mixes up for me and which I keep in the fridge here at work. It's got Maalox and Xylocaine in it.

As far as pullback or stabilization of dry mouth, all I know is that some days are better and some are worse for me.

I hope you find some products that are helpful to you!

[Michael1234]

Thanks for your very informative reply. I gonna ask my Doc for prescription.  The tree oil and other ideas I also gonna try. 

[bjnc]

I take Evoxac also, and it definitely helps, but I still experience dry mouth.  It's just less severe than if I don't take the Evoxac. 
I chew sugarfree gum a good bit of the day, and it also helps.  That is the most helpful thing I've found besides the medicine.
Bjnc

[A66eyroad]

Michael, my antibody test came back as negative, too, but my rheumotologist treats me the same as if it were positive. Which I greatly appreciate.

[Carolina]

Treat the symptoms:  salagen or evoxac will help enormously.

Hugs,  Elaine

[Richards1953]

My mouth is also like the desert and everything tested negative till I had the lip biopsy.
  I use anything and everything I can find.  No evoxac in Canada and found out yesterday that the salagen generic (pilocarpine) has now been discontinued in Canada.  Salagen is way more expensive and I take 6 per day.  It also helps very little but a little is better than nothing at all. I stuff my mouth with biotene gel at night and use biotene spray, moisstir spray and mouth kote - all to little avail.  The placquenil has not helped and rheumatologist testing to see if I can take imuran - which she told me not to look up on the internet so not even sure what she want that to do.  I try any gum or candy that uses xylitol but mouth is so tired by the end of the day trying to get enough to actually swallow that I try not to do gum during the day.  Lots of people like the xylitol melts or the oramoist melts, particularly at night. (don't do anything for me).  I always have water with me and take sips and drink it constantly throughout the day.
Also try the Xylitol mints and the ice breakers 'Frost' mints.  I use vaseline, aquaphor, zim's crack creme, and polysporin for night on my lips. I have also tried lansinoh for my lips.  It is what nursing mothers use on their sore, chapped breasts.  It is quite thick but stays on longer and contains lanolin - not petroleum product.   Someone from this forum once told me the lips aren't chapped - they are dry from the inside out!  That made a lot of sense - so all you can do is keep something on them to make them as comfortable as possible.  I go nowhere without my 'lip stuff' and have to reapply every few minutes.  I keep searching for something - anything that will help my mouth.  Would dearly love to at least try the evoxac . . .  'Magic mouth wash' is wonderful for dabbing on sores in mouth.
Sorry for the rambling - but hopefully there is something here that might help you. 

[warmwaters]

In addition to the good bits of info you have already received, some things to think about.

Do you currently take any medicines that might be contributing to the dry mouth?  Many meds have dry mouth as a side effect - including really simple stuff like antihistamines for allergies. Make sure that you review whatever you take, including over the counter medicines, to see if you have anything there that might be contributing to dry mouth.

I find a slightly acid beverage helps me produce saliva, like water with a squirt of lemon or lime.

Do you have any other Sjogren's symptoms, such as dry eyes, fatigue, muscle or joint pain, or swollen paratoid glands?  If you do, you should be talking with your doctor about treating you based on your symptoms.

Best

[quietdynamics]

Michael1234: Welcome to the forum.

Here is link to discussion for "Early Sjogren's test" IMMCO, SJO test which your Dr. can order, eye Dr. and perhaps dentist
Since you have already had tests: Dr. can order for Early markers alone.  No need to have redundant tests.
https://sjogrensworld.org/index.php?topic=22714.0

There are forum member who have had this test.

There can be other reason for "Dry Mouth" and your doctor should be investigating.
It is possible that with SJS dry eyes start.. way before they become bothersome.

-Chewing sugarless gum with Xylitol, helps promote saliva. I found Wiggleys Polar Ice to be the most beneficial in "instant gratification".. at least an "Ahh sensation, that feels good" with dry mouth.
- hydration is important: sipping at least 2 liters of water/day). Not gulping to quench thirst, as 'drinking' water washes away protective mucous coating. After brushing teeth I drink 2 glasses of water (as I have already 'washed away' oral coating.. and a clean tongue is important.)
A few drops of lemon juice in sipped helps promote saliva.. lemon juice is used in test for salivary gland function.

Oral hygiene is important.
Even simply when out eating/dining.. going to rest room and swishing water to remove food particles. Plus fluoride in tap water has a proven dental benefit for a few hours after swishing.

Article: Saliva - more than just water in your mouth
http://www.eufic.org/article/en/artid/Saliva-more-than-just-water-in-your-mouth/

Since you are early into symptoms, I strongly suggest that you keep a short note/diary of symptoms.. date, symptom, possible trigger(?).  This will help you and your Doctor, especially as you have not started any meds.. and you are establishing a baseline (pre-meds)

My best to you.