Does the dry mouth come and go?

[Jeigh44]

I have primary sjogrens and up to this point most of symptoms have been joint pain, tingling in my legs, fatigue, etc.  I have had so amount of dry mouth and eyes but the last two weeks have been heck.  I woke up three nights in a row with my tongue literally stuck to the roof of my mouth.   My question is, will this go away, or is it going to now be like this indefinitely?  My tongue is also a mess.  it looks like all of the taste buds are inflamed.    I do have a prescription for Evovax.   Any info would be appreciated! 

THANKS! xo

[meirish]

Some people have dryness that comes and goes. Everyone is different. Have you gone to the drug store and hunted the aisles for products that you can suck on or apply to the inside of your mouth to help with the dryness at night. I have that occasionally. I suck on sugar free cough drops at night and have done so for years and years. I have developed a place in my left cheek that seems to keep the cough drop in place. I am also a side sleeper. If you are a back sleeper you could choke.

Also, keep a glass of water on your bedside table and also a personal humidifier is great to have at the side of the bed. It does help with the night dryness. Make sure that you don't get too much moisture in your bedroom or you could grow some mold. Check at Menards for one and many people find the personal humidifiers on line. Good luck. meirish

[susanep]

I also agree with those tips.

susanep

[Jeigh44]

Thank you!  I woke up and was like WTH is going on.  LOL!   My tongue felt like it was glued to the roof of my mouth. 

[araminta]

I always sleep on my side, so  keep some sugar free chewing-gum in one side of my mouth all night, it makes a big difference.   However I wouldn't like to recommend it, because as meirish points out, you might choke if you turn on to your back.   Xylimelts are safe to keep in your mouth all night, they stick to your gum.

[sunflower]

For me, it's worse at some times than at others.

I have been using Xylimelts for years and they really help.  Just one keeps me comfortable.  I'm all over the place when I sleep and I've never had a problem with them coming loose.

[Floridalady]

Evoxac is a lifesaver for me. Some days are dryer than others but before Evoxac I had sores in my mouth and could not swallow food. After six months on Evoxac it was a lifesaver.

Hang in there.

Anna

[Maria3667]

For me it's been bad from the beginning, some 27 years ago now (diagnosis was later).

For some years I've had slight improvement by using testosterone cream, but this effect petered out on me when I was 3.5 years into menopause. Also had some luck with DHEA cream or sublingual tablets. Been on pilocarpine from 2002 onwards, my saving grace. 

All my teeth would have decayed if it wasn't for these medicines. It's a nasty syndrome so try to protect yourself as best as you can!

[Judie P]

Hi, there.  I have primary Sjogren's as well.  My problems began with gastrointestinal and I rarely had a problem with dry mouth.  I have been diagnosed for 8 years now.  My husband I had to leave our business location and it took two months to get out of there.  After that, I began to have a lot more anxiety and my mouth was dry all the time.  It was the first time that I would wake up in the middle of the night and have my tongue stuck to the top of my mouth.  I had a hard time swallowing as well.  Well, I am not diabetic and everything else came up normal, so I am convinced that it was a flare from stress.  I have also had times when I eat and then my mouth goes dry after two hours.  And I am not diabetic.  I truly is a saliva problem.  Hope this helps.

[SjoGirl]

Yes, winter is worse with the overall dryness. Using a humidifier can help. I can't use Xylitol because it upset my gastrointestinal system. I took Evioxac which made a huge difference in the dryness, my gums, etc. I stopped some time ago as I seemed to be in remission but the dryness is now back with a vengeance. I hope you can find something that works for you.

[Carolina]

Jeigh, I know that level of dryness....it sucks.

This time of year (winter here, forced hot air heating) I run a big humidifier in our bedroom.  The humidifier and 30 mg of Salagen a day help tremendously.

I also keep Ultra Systane Eye Drops and a bottle of water next my bed.  I put in the eye drops whenever I wake up, and take a mouthful of water and use the three S technique:  Sip, Swish, Swallow.  Just drinking the water right down isn't helpful, really.

I also use Mucinex morning and night, because without it my dryness turns my mucus and postnasal trip into glue.  Then at night my nose is blocked and I must breathe through my mouth.  In the morning my mouth is like a Brillo Pad, like a foreign object the next morning...it is actually scary.

I hope you get some help and take your Evoxac.

Elaine

[Kelley170]

I have primary Sjogren's and very dry mouth. Mine started about 4 years ago and has not improved on its own.
The only thing that I have found that really works is taking pilocarpine (Salogen). It has been a life saver for me!

I also use dry mouth toothpaste, dry mouth mouthwash, and drink lots of water. I also brush my teeth after every meal since dry mouth makes us more prone to cavities. In addition I stay away from sugary drinks and foods.

There are many options.  Hopefully you will find relief!
Kelley