Sjogren’s Syndrome – Introduce yourself and meet others

Posted by cmtg @cmtg, Aug 20, 2016

I have been diagnosed with this and I’m in pain most days and would like to have discussions.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

@jmb73

Hi Lynnie, I have refused the lip biopsy as I don't need more mouth sores. My SSA & SSB came back positive 30 years ago and since then I have had my bloods done again to see the progression of the disease. Most of the time it's positive but sometimes they come back negative. Since I understand that Sjogren's is chronic and doesn't have a cure, I don't get excited. My rheumy says he treats the symptoms. Take care, Joan

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That helps me. Thanks. Hugs.

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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.

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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

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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

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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

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What helps most with this dryness

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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

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@rexsan20

What helps most with this dryness

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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.

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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.

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@jetsetter

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.

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@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

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@johnbishop

@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

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Thank you! I never heard of lip tape. What a concept. My husband will thank you. Not sure if I could tolerate it as I’m up a couple of times in the night but it’s worth a try.

I also have used the Biotene rinse, I love the mouth spray and keep it at my bedside so I can reach over and grab it when I awake. I also tried the mouth gel but it doesn’t last very long.

Thank you!

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@jetsetter

Thank you! I never heard of lip tape. What a concept. My husband will thank you. Not sure if I could tolerate it as I’m up a couple of times in the night but it’s worth a try.

I also have used the Biotene rinse, I love the mouth spray and keep it at my bedside so I can reach over and grab it when I awake. I also tried the mouth gel but it doesn’t last very long.

Thank you!

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@jetsetter There is another thing that might also help if the lip tape doesn't work for you, a chin strap to prevent snoring also keeps the mouth closed when you sleep.

Here's one style but you can find others on Amazon also – https://www.amazon.com/Snowy-Egret-Natural-Adjustable-Comfortable-Neoprene/dp/B07PFSYYWY/ref=sr_1_4_sspa

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