Sjogren’s Syndrome – Introduce yourself and meet others

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!

@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

Can you please tell me what brand of Flax see caps? Thank you

I had it for quite a while due to the poisonous effects of ruptured silicone implants after a bilateral mastectomy. I’m not sure how it gradually receded, but I am no longer am plagued by it.

Hello I have had Sjogrens Syndrome seems like forever before I got diagnosed now years later I’m now with MCTD and found out today my kidneys are stage 3 b ! I was at a stage 3 a before a nurse told me cause I told her I was taking Advil for pain. Several years ago I ended up in icu with sepsis.. yeah they told my husband to call my children to say goodbye before they could I ended up on ventilator for couple weeks with multi organ failure. Now after Heart attack , Stent , small bowel blockage and surgery for that .I’m so frustrated with Drs seems they don’t care at all. Today the Rhuemotology doc wants to start me on Humira injections my gut tells me a big No. I’ve taken Nexium twice day for years for esophagus to find out it can cause kidney failure grrrrr. I just want to know has anyone had similar issues? Thx Nice to Meet Y’all .

I have had this for over 40 years now. Be glad to talk with you about it. Thanks

I was diagnosed in 1990s by lip biopsy and blood work. My main complaint was dry eye. I had punctal occulusion in late 90s. My mouth is not wholly dry. I’ve been in “remission” (my term) for years. Only using eye drops as needed and increasing moisture in my environment when needed.
I’m now dealing with a skin condition that we are trying to definitively diagnose. Is it lichen schlerosus or morphea? I think my dermatologist is going to consult with my rheumatologist and, hopefully, my gynecologist. Related? We will see

Welcome to connect, I have gotten mouth linchen in my mouth, I usually deal with it thou along with activation of burning mouth syndrome? Which it seems to be triggered by a IV contact dermatitis hypersensitivity response to something I'm allergic to. You might want to consider having allergy testing done. I'm going to be getting referred to Mayo, for Sjogren's, But; my Antibodies test always comes back negative, But definitely have all the other symptoms for years, Did you ever have that problem before getting a positive blood test?

I’m not familiar with that term for mouth I will look it up. After my last hospitalization I was so sick out of my head for days and my dentures sat in a dry cup!! Now I battle with thrush every other month Dr thinks it’s my dentures causing it but they cost too much to replace . I also battle dry eyes , dry mouth dry everything 😢Now rf blood test very high with high sed rate . So discouraging. Hope you feel better soon.

@gingerbear22 how very lucky for you that the doctors are going to talk with each other! Are they local doctors or university related? I found this information on Morphea scleroderma:
https://www.mayoclinic.org/diseases-conditions/morphea/symptoms-causes/syc-20375283
Do you have other symptoms of Sjögren’s syndrome besides the dry eyes?