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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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Profile picture for carlarosie
carlarosie | @carlarosie | Feb 24 12:09pm
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 buy a bottle of 100 through Amazon. I prefer the sweet, though they are not sweet, to the mint. That will be your choice.

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caly89 | @caly89 | Feb 24 8:18pm
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 using the Biotene rinse mouthwash and the moisturizer spray, they are pretty good!

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fairn | @fairn | Feb 25 7:28am
In reply to @kellen "Pilocarpine seems to be working most of the day for me. I just started it 2..." + (show)
Profile picture for kellen @kellen

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 had positive ANA and CCP along with some low blood counts. My rheumatologist did an 'Early Sjogren's Profile Panel ' on me because I have all the symptoms of Sjogren's but don't test positive on the traditional anti-SSA, SSB tests, which according to him often won't be positive until there is advanced damage. The early panel was developed to help with an earlier diagnosis, but it's not relied on for an official diagnosis of Sjogren's. My rheumatologist has been great in that he is more concerned with treating the symptoms and inflammation and is quick to acknowledge that the tests aren't always able to detect the antibodies. Sjogren's is a tough one to diagnose apparently.

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3 replies
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kellen | @kellen | Feb 25 8:08am
In reply to @fairn "@kellen I had positive ANA and CCP along with some low blood counts. My rheumatologist did..." + (show)
Profile picture for fairn @fairn

@kellen I had positive ANA and CCP along with some low blood counts. My rheumatologist did an 'Early Sjogren's Profile Panel ' on me because I have all the symptoms of Sjogren's but don't test positive on the traditional anti-SSA, SSB tests, which according to him often won't be positive until there is advanced damage. The early panel was developed to help with an earlier diagnosis, but it's not relied on for an official diagnosis of Sjogren's. My rheumatologist has been great in that he is more concerned with treating the symptoms and inflammation and is quick to acknowledge that the tests aren't always able to detect the antibodies. Sjogren's is a tough one to diagnose apparently.

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@fairn thank you. Very good to know.

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1 reply
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fairn | @fairn | Feb 25 8:37am
In reply to @kellen "@fairn thank you. Very good to know." + (show)
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@fairn thank you. Very good to know.

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@kellen I am learning to be curious and to (politely) keep asking questions. It helps me to jot down symptoms and questions for upcoming visits so I am sticking with 1 or 2 main issues.

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gypsyblue | @gypsyblue | Feb 25 9:50am
In reply to @carlarosie "I’ve been using XYLIMEKTS for a couple of years and makes all the difference in the..." + (show)
Profile picture for carlarosie @carlarosie

I’ve been using XYLIMEKTS for a couple of years and makes all the difference in the world during the night. My tongue no longer is glued to my pallet when I wake up.

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@carlarosie I agree! These are a life saver for dry mouth sufferers!

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jw9 | @jw9 | Mar 2 11:11pm
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 and your dry eyes were from autoimmune illness? I had that within the first years of Sjogrens Disease. It didn't work at all. Maybe I had a rookie doctor?! No, I was told that if there was damage to the glands in the eyelids, punctal plugs weren't going to help. There wasn't any moisture to keep in with the plugs. Glad to hear they helped somebody.

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jw9 | @jw9 | Mar 2 11:13pm
In reply to @mermaid7272 "@migraineelaine ---It's scary to sleep with any sort of a drop in your mouth! I've warned..." + (show)
Profile picture for mermaid7272 @mermaid7272

@migraineelaine ---It's scary to sleep with any sort of a drop in your mouth!
I've warned others about my aunt who choked on a drop while sleeping.
Please be careful.

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@mermaid7272 I agree. You could inhale a drop, a worse problem than dry mouth

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jw9 | @jw9 | Mar 2 11:20pm
In reply to @fairn "@kellen I had positive ANA and CCP along with some low blood counts. My rheumatologist did..." + (show)
Profile picture for fairn @fairn

@kellen I had positive ANA and CCP along with some low blood counts. My rheumatologist did an 'Early Sjogren's Profile Panel ' on me because I have all the symptoms of Sjogren's but don't test positive on the traditional anti-SSA, SSB tests, which according to him often won't be positive until there is advanced damage. The early panel was developed to help with an earlier diagnosis, but it's not relied on for an official diagnosis of Sjogren's. My rheumatologist has been great in that he is more concerned with treating the symptoms and inflammation and is quick to acknowledge that the tests aren't always able to detect the antibodies. Sjogren's is a tough one to diagnose apparently.

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@fairn
I hope your rheumatologist will just start treating you! I've had Sjogrens Disease (It's now called a Disease, not a syndrome) for 30 years and never once had any Sjogrens antibodies. Then 15 years ago I was diagnosed with RA but its seronegative, again no antibodies. I did have Citrulline positive though and that marker shows that you've already had some bone erosion.

Yeah, the main thing is to start getting treatment. I hope your rheumatologist thinks it over twice!

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1 reply
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fairn | @fairn | Mar 3 8:25am
In reply to @jw9 "@fairn I hope your rheumatologist will just start treating you! I've had Sjogrens Disease (It's now..." + (show)
Profile picture for jw9 @jw9

@fairn
I hope your rheumatologist will just start treating you! I've had Sjogrens Disease (It's now called a Disease, not a syndrome) for 30 years and never once had any Sjogrens antibodies. Then 15 years ago I was diagnosed with RA but its seronegative, again no antibodies. I did have Citrulline positive though and that marker shows that you've already had some bone erosion.

Yeah, the main thing is to start getting treatment. I hope your rheumatologist thinks it over twice!

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@jw9 Oh, he is! Sorry if that wasn't clear. He's saying I have Sjogren's and has me on Hydroxychloroquine.

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