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 Support Group.

Profile picture for sheritaylor @sheritaylor

@colleenyoung I really am suffering with thick mucous in my mouth, especially at night. I take Cevimeline 3 times per day. It is still awful. I have read that Plaquenil doesn't really help with dry mouth and thick stuff in my mouth. Does anyone have anything good?

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@sheritaylor I forgot to mention that another one that helped me prevent the thick mucous and dry mouth was popping in a XyliDENT Xylitol Tablet and letting it dissolve in my mouth before bedtime. They are inexpensive and coming in different flavors.

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Profile picture for sheritaylor @sheritaylor

@becsbuddy What OTC allergy pills do you take?

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@sheritaylor Just store brand

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Profile picture for sheritaylor @sheritaylor

@colleenyoung I really am suffering with thick mucous in my mouth, especially at night. I take Cevimeline 3 times per day. It is still awful. I have read that Plaquenil doesn't really help with dry mouth and thick stuff in my mouth. Does anyone have anything good?

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@sheritaylor Good morning. I too have the thick choking stuff. But only at night laying down. So I wonder if it is coming from/draining from my nose? Anyway, I give each nostril a squirt of Otrivin with moisturizers mist spray. no more issues with the stuff.

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Profile picture for jwpmc @jwpmc

I have had Hashimoto's Thyroiditis for several years, with multiple thyroid nodules. I also suffer from many of the symptoms I see associated with Sjoren's. Can this disease be positively diagnosed, & if so, what is the protocol?

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@jwpmc rheumatologist
If that doesn’t work
ENT- they biopsy the glands in your mouth
Eye doctor- does two different test on your eyes to check for Sjogren’s.
I tested positive on the last two and later six months later my labs came back positive for Sjogren’s mixed connective tissue disease, lupus and hashimotos.
I was dna tested for lupus since I had so many positive test at once. That came back positive.

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Profile picture for Becky, Volunteer Mentor @becsbuddy

@sheritaylor Welcome to Mayo Clinic Connect! The members will see your question in the morning, but, in the meantime I just wanted to welcome you and tell you that you’ve really come to the right place!
Is Sjögren’s syndrome a new diagnosis for you? I’m sure everyone here can help you with it. I, too, have very thick mucous in my mouth, especially at night. I find that OTC allergy pills really help. You might ask your doctor about them and see what they recommend.

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@becsbuddy I’ve been diagnosed with Sjogren’s disease about 3 years ago. I also have other autoimmune diseases. Any recommendations of a good Rheumatologist in the Central Florida area?

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Profile picture for Colleen Young, Connect Director @colleenyoung

Welcome to Connect @cmtg. You have landed in the right place. I'd like to introduce you to a few other members who also have Sjogren's. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I'm confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/

CMTG - why type of pain do you experience and what methods or treatment do you use to try to manage it?

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@colleenyoung I have joint pain in my knees and back. Stiffness when I wake up in the morning. I take low dose Naltrexone. I couldn’t take Plaqunil or Methotrexate. I’m anxiously awaiting the new medication for Sjogrens in Phase IV of a trial.

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