Sjogren’s Syndrome – Introduce yourself and meet others

That helps me. Thanks. Hugs.

I go in for my lip biopsy because antibodies are negative but rheumy is pursuing diagnosis because of 6th Nerve Palsy and dry eye, arthralgia, fibromyalgia, ANA titer positive. I'm recommended to get conscious sedation over general anesthesia so I get the C.S. When I come back to my follow up who is the surgeon/ENT, he walks into the room, and nonchalantly says something to the effect that I was squirming around and trying to talk to him during the procedure. I wonder now, if that could affect him getting a good sample. Then, he said, boy, your glands were red and sure looked like Sjogrens. Then he said, you can't believe everything you see. Report came back negative for lymphoid aggregates. All I can say, is boy, life is like a very weird dream sometimes.

Sjogren’s Foundation 2021 Living with Sjögren’s survey, due by November 5, 2021.

The survey will paint a "big picture view" of Sjögren’s by documenting the entire range of disease features. Showing that Sjogren's is more than dryness is critical for educating clinicians, researchers, and others about the reality of Sjogren’s disease.
https://surveys.harrisinsights.com/survey/selfserve/53b/211003?list=opn&smp=2&schannel=1

I have SS and I take pilocarpine. Which does better this one or the Cervimeline? I have severe drynes in eyes , mouth a and nose

I have Primary Sjogrens Never had Lip Biopsy Blood levels were so bad and still are Dr said I had it FOR SURE Diagnosed 18 yrs ago

What helps most with this dryness

An actual, well written article on Sjogren’s and POTS! And, about the inequities of our medical system.
https://www.nytimes.com/2021/11/09/well/live/chronic-pain-treatment.html

Hello @rexsan20, I have a lot of teeth issues and dry mouth. There are many products out there to help with dry mouth. For me, at least at this point, I swish and drink a lot of water throughout the day. I brush my teeth and gargle at least three times a day. At night, I gargle with Act fluoride mouth wash, nonalcohol, for dry mouth. I’d recommend you speak with your dentist as well. I have issues with oral thrush as well. When I feel an outbreak coming on, I gargle with a drop of oregano oil (it’s anti fungal) in water.

Help for dry mouth - I had read about Xylimelts Dry Mouth by OraCoat on the Smart Patients website (great resource similar to this Mayo Connect site). Xylimelts are small discs containing Xylitol that adhere easily to your gum line. They stimulate saliva production. I needed help at night with moisture production because I would wake up with my mouth so dry I couldn’t even move my tongue! I sleep on my back so I’m sure my mouth is open much of the time.

I tried the xylimelts last night and it was helpful. The lozenge stayed in place most of the night and was gone when I got up this morning. I bought the “slightly Sweet” flavor. There is also a mint flavor. I ordered them on Amazon. 40 melts for about $10.

I have also used ACT Dry Mouth Lozenges and Oral-B Moisturizing lozenges, but felt these were much better because I won’t choke on it if I fall asleep before it dissolves.

You can use them in the daytime as well and can eat and drink while they are in place.

@jetsetter I've used Biotene mouthwash but they have several different products for dry mouth. They have helped quite a bit - https://www.biotene.com/dry-mouth-products/. I also tried some lip tap to prevent the mouth from opening but it just wasn't comfortable enough for me but it also may work for a lot of people. They have several types and styles but I was looking for something that wouldn't hurt when you pulled it off in the morning and this fits the bill for that - https://www.amazon.com/gp/product/B08PBJZJWL/ref=ppx_yo_dt_b_search_asin_title