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

Posted by harryboy7 @harryboy7, Feb 19 9:54am

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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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)

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

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)

@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!

sharrondriver | @sharrondriver | Feb 21 7:23pm

I take Cevimeline , I would say 3 years now , it helps so much

patient101 | @patient101 | Feb 22 10:25am

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.

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)

@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

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)

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

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)

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

migraineelaine | @migraineelaine | Feb 22 10:52am

I go to sleep with a sugarless Ricola cough drop in my mouth. Sometimes I awake in the night and pop in another one.

sharrondriver | @sharrondriver | Feb 22 2:01pm

In reply to @migraineelaine "@bettersleep68 Just as a heads up, xylimelts singed my tongue and it took a week to..." + (show)

@migraineelaine not sure what you mean , signed my tongue

carlarosie | @carlarosie | Feb 22 8:26pm

In reply to @kellen "Pilocarpine seems to be working most of the day for me. I just started it 2..." + (show)

@kellen I have been using Zylamelts for the past couple of years and they seem to help a lot at night. I’m sure you could use them during the day as well if needed.