What helps with dry mouth with Sjogren's?

Posted by bonnies1999 @bonnies1999, Jan 9 1:32pm

My 54 yr old son was just diagnosed with Sojourns disease
Extremely fatigued, very dry mouth, joints ache
Nothing help. Any suggestions?

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Profile picture for eyesmart @eyesmart

Disclaimer: I'm not an eye doctor but...

For your information: Ask your doctor about an amniotic membrane called AcellFX.

Theres a Preservative Free Eye drop called iVIZIA, it works wonders and its inexpensive.

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@eyesmart I use Ivizia . It’s great and
My eye Dr said use it as often as I want

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I have Sjogrens and autoimmune issues. My mouth is getting more dry than ever. Night time is the WORSE. I have tried everything in the book. I know there is a medication that can help when all else fails.I am wondering if anyone has tried it, and if so what did they think. Thanks

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Profile picture for harryboy7 @harryboy7

I have Sjogrens and autoimmune issues. My mouth is getting more dry than ever. Night time is the WORSE. I have tried everything in the book. I know there is a medication that can help when all else fails.I am wondering if anyone has tried it, and if so what did they think. Thanks

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I use xylimelts disc for dry mouth...works very well..you can find them by the toothpaste and mouthwash..hope it helps you

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Profile picture for harryboy7 @harryboy7

I have Sjogrens and autoimmune issues. My mouth is getting more dry than ever. Night time is the WORSE. I have tried everything in the book. I know there is a medication that can help when all else fails.I am wondering if anyone has tried it, and if so what did they think. Thanks

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My doctor put me on Cevimeline and it has helped quite a bit. Lately it feels a little drier than it's been but it could be related to allergies. I hope you find something that works for you!

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Profile picture for harryboy7 @harryboy7

I have Sjogrens and autoimmune issues. My mouth is getting more dry than ever. Night time is the WORSE. I have tried everything in the book. I know there is a medication that can help when all else fails.I am wondering if anyone has tried it, and if so what did they think. Thanks

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Thanks. I will try.

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Profile picture for harryboy7 @harryboy7

I have Sjogrens and autoimmune issues. My mouth is getting more dry than ever. Night time is the WORSE. I have tried everything in the book. I know there is a medication that can help when all else fails.I am wondering if anyone has tried it, and if so what did they think. Thanks

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Thanks. I will ask my doc about it.

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Profile picture for harryboy7 @harryboy7

I have Sjogrens and autoimmune issues. My mouth is getting more dry than ever. Night time is the WORSE. I have tried everything in the book. I know there is a medication that can help when all else fails.I am wondering if anyone has tried it, and if so what did they think. Thanks

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I started pilocarpine tablets 5g three a day about a month ago. Going to keep taking it a couple more months, but so far, I don't really see any difference or improvement at all. Right now, I'm on Vevye for dry eyes and also am using blood serum eyedrops. That is helping somewhat.

But the worst of all my Sjogren's (which, after complaining about to doctors for 12 years, FINALLY got diagnosed!) is the dry dry dry nasal passages/sinuses. Man! So dry that the normal mucus just stays up there in clumps making it hard to breathe -- especially when I'm trying to sleep. 🙁

An ENT a few years ago prescribed mupirocin ointment. In a strange way. He said to squirt about a third of the tube into a bottle of saline solution that you buy at the store and shake it up. Then squirt it up my nose at least once a day. AND IT WORKED! However, I learned later (this was during the pandemic, so we were on our own a lot ... it seemed) that it's not supposed to be used forever, and I had used it for FOUR YEARS! I didn't know and the ENT didn't say anything about how long to use it. Oh, well. But when I stopped, all the problems with my nasal stuff came right back.

I really don't know what to do. I'm miserable. I started using a humidifier in my bedroom at night and will continue at least through the winter months. I also use Xlear sinus spray, which is nice, but doesn't last long.

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Profile picture for harryboy7 @harryboy7

I have Sjogrens and autoimmune issues. My mouth is getting more dry than ever. Night time is the WORSE. I have tried everything in the book. I know there is a medication that can help when all else fails.I am wondering if anyone has tried it, and if so what did they think. Thanks

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I have taken pilocarpine for about 7 years and it works great for dry mouth, not much help for dry eyes!!

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Profile picture for harryboy7 @harryboy7

I have Sjogrens and autoimmune issues. My mouth is getting more dry than ever. Night time is the WORSE. I have tried everything in the book. I know there is a medication that can help when all else fails.I am wondering if anyone has tried it, and if so what did they think. Thanks

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Pilocarpine seems to be working most of the day for me. I just started it 2 weeks ago. I haven’t been diagnosed yet for Sjoren’s because the bloodwork doesn’t show it. It does show ANA positive and high Centromere, but that’s for the Raynaud’s syndrome I have. I have had unbearable dry mouth since November, 2025 and tried everything. I do have a Rheumatologist because of my Osteoperosis treatment, the ANA positive with Centromere. I was told that it could be a false negative for Sjogren’s right now, but may show up later on.

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Profile picture for harryboy7 @harryboy7

I have Sjogrens and autoimmune issues. My mouth is getting more dry than ever. Night time is the WORSE. I have tried everything in the book. I know there is a medication that can help when all else fails.I am wondering if anyone has tried it, and if so what did they think. Thanks

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I was prescribed Pilocarpine but the worst part was I got the cold sweats every time I took it. Not sure how much it helped me but the side effects were pretty rotten.

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