Has anyone used the oral medication for dry mouth (Sjogren's)?

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.

@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.

@fairn thank you. Very good to know.

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.

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

@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.

@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.

@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!

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

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.