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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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harryboy7 | @harryboy7 | Feb 21 10:10am
In reply to @justrosie "I started pilocarpine tablets 5g three a day about a month ago. Going to keep taking..." + (show)
Profile picture for justrosie @justrosie

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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@justrosie Its so frustrating isn't it? Thanks for your story. I will mention something that worked for my dry eyes. My eye doc put in some "punctual plugs." Best thing is to Google it to explain it. A very simple procedure. I still have dry eyes, but has improved immensely since the plugs.
The mouth is a whole nothing story. I wake up so congested (throat mucus) from the severely dry mouth in the night. Probably worse than the Sahara desert. I am hoping medication might help. I want to get as much feedback if possible to see if it is worth it.

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harryboy7 | @harryboy7 | Feb 21 10:16am
In reply to @kellen "Pilocarpine seems to be working most of the day for me. I just started it 2..." + (show)
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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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@kellen I have heard that Sjogren's it hard to diagnose. My dry mouth is also unbearable! I did hear that taking Pilocarpine could cause sweats. I hate taking anything...especially if there are nasty side effects. If it improve my dry eyes, I might take it. I feel desperate. It has gotten worse every year.

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harryboy7 | @harryboy7 | Feb 21 10:20am
In reply to @lgreg "I have taken pilocarpine for about 7 years and it works great for dry mouth, not..." + (show)
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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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@lgreg That is very encouraging. For the dry eyes my Ophthalmologist placed " Punctual Plugs"
in the eyes. Helped a lot. Google to get info.

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2 replies
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tulips2026 | @tulips2026 | Feb 21 2:35pm
In reply to @harryboy7 "@kellen I have heard that Sjogren's it hard to diagnose. My dry mouth is also unbearable!..." + (show)
Profile picture for harryboy7 @harryboy7

@kellen I have heard that Sjogren's it hard to diagnose. My dry mouth is also unbearable! I did hear that taking Pilocarpine could cause sweats. I hate taking anything...especially if there are nasty side effects. If it improve my dry eyes, I might take it. I feel desperate. It has gotten worse every year.

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@harryboy7
I was diagnosed by a biopsy for Sjogrens and every year it progresses but for me the dryness has caused swallowing issues...I have been using pilocarpine since October and would rather use it than not even though it only helps with dry eyes but doesn't last for long and can't take more than 5 mg at a time because my heart races. Plugs did nothing. It is an awful disease...swallowing gets worse and a lot of choking and coughing!
Moved to Nova Scotia and care is awful...only 1 rheumatologist for 40k people... I hope you find relief
All the best!

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sharrondriver | @sharrondriver | Feb 21 7:23pm
In reply to @harryboy7 "I have Sjogrens and autoimmune issues. My mouth is getting more dry than ever. Night time..." + (show)
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 take Cevimeline , I would say 3 years now , it helps so much

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patient101 | @patient101 | Feb 22 10:25am
In reply to @harryboy7 "I have Sjogrens and autoimmune issues. My mouth is getting more dry than ever. Night time..." + (show)
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 been on it for decades! My current rheumatologist says it doesn’t work for all his patients, and up to 75% stop, but for me it works fine.

Lately, I have had breakthrough dryness, but whether it is a problem with Sjogrens or another med I am taking, I can’t tell. I’ve up my treatment to add xylimelts at night, with eye ointment and drops during the day.

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bosslady38 | @bosslady38 | Feb 22 10:34am
In reply to @harryboy7 "@lgreg That is very encouraging. For the dry eyes my Ophthalmologist placed " Punctual Plugs" in..." + (show)
Profile picture for harryboy7 @harryboy7

@lgreg That is very encouraging. For the dry eyes my Ophthalmologist placed " Punctual Plugs"
in the eyes. Helped a lot. Google to get info.

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@harryboy7 I've started using Biticon mouth wash it don't completely stop it but it's worked very well with me I use it 2x daily and it's been manageable. I know dry mouth is horrible and embarrassing I hate talking to people it's weird feeling. But I use the dry mouth mouth wash works pretty well. Kinda pricy but worth it!!! Good luck

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bosslady38 | @bosslady38 | Feb 22 10:36am
In reply to @tulips2026 "@harryboy7 I was diagnosed by a biopsy for Sjogrens and every year it progresses but for..." + (show)
Profile picture for tulips2026 @tulips2026

@harryboy7
I was diagnosed by a biopsy for Sjogrens and every year it progresses but for me the dryness has caused swallowing issues...I have been using pilocarpine since October and would rather use it than not even though it only helps with dry eyes but doesn't last for long and can't take more than 5 mg at a time because my heart races. Plugs did nothing. It is an awful disease...swallowing gets worse and a lot of choking and coughing!
Moved to Nova Scotia and care is awful...only 1 rheumatologist for 40k people... I hope you find relief
All the best!

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@tulips2026 it's very hard to talk also. I understand the swallowing issue as well. Good point of view!!!

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migraineelaine | @migraineelaine | Feb 22 10:49am
In reply to @bettersleep68 "I use xylimelts disc for dry mouth...works very well..you can find them by the toothpaste and..." + (show)
Profile picture for bettersleep68 @bettersleep68

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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@bettersleep68
Just as a heads up, xylimelts singed my tongue and it took a week to recover. yikes

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1 reply
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migraineelaine | @migraineelaine | Feb 22 10:52am
In reply to @harryboy7 "I have Sjogrens and autoimmune issues. My mouth is getting more dry than ever. Night time..." + (show)
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 go to sleep with a sugarless Ricola cough drop in my mouth. Sometimes I awake in the night and pop in another one.

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