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Sjögren’s Syndrome: how do you manage the symptoms?
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I see a rheumatologist next week for sjorgens syndrome. Last summer a sinus doctor I saw mentioned it to me and recommended I see a rheumatologist. I never had heard of sjorgens and I have never been to a rheumatologist. At the time last summer. My only symptom was very dried out mouth. I developed dry eyes only a few months ago. The otc drops for dry eye stopped working unless my eyes were just getting worse so my eye Dr recommended something stronger otc. It's better. He did prescribe me restasis but unfortunately even with my insurance it was too expensive so I could not get it. But my other concern is the body/joint pain I ha e been having. It's gotten so bad tonight is the first time I have been up all night. I do have a unrelated degenerative changes near my lumberspine which is causing other embarrassing issues but my other pain started actually even way before the dry mouth. It started very soon after my gallbladder surgery last January. It started in my upper back spasms and just painful. Worse now then last 6 months went to my shoulders that's very tender, my neck. Arms. I read a article about sjorgens pain being similar to fibromyalga pain. I wondering if anyone thought it was sjorgens related being this painful or maybe something else? I have wanted imaging, preferably a mri bur been unable to get it. I'm hoping next week the rheumatologist will order something. Also last summer my sinus doctor did order bloodwork some sjorgens antibody bloodwork 5 of them and they were all normal. Although now with my symptoms progressing I wonder what bloodwork now would show. Any feedback would be greatly appreciated. Thank you.
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The eye doctor puts them in the lower eyelid tear duct. It blocks it so the few tears we make stay on your eye not drain. It is a painless procedure and takes just a couple of minutes to do. I get temporary ones done evey 4-6 months because they slowly dissolve. You can get permanent ones put in or even have that tear duct cauterized shut. It’s amazing how much better my eyes feel after he puts them in.
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2 ReactionsJust a heads up that ACT lozenges, which I'd used all the time, are acidic and can cause cavities. I learned that the hard way. I saw an oral medicine specialist at Tufts who taught me about the importance of more basic (vs acidic) substances for dryness.
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1 ReactionWhat did your specialist suggest to use instead?
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1 ReactionYes I'd like to know also. I was just diagnosed a few weeks ago, but sugarless candies and sugarless gum were suggested to increase saliva. I had no medical suggestions, but had several surgeries related to GERD, so I can't seem to tolerate lemon, or mint, I accidently game across strawberry altoids (which I see have maltic "acid" and citric acid in them. I'll try to check with my dentist.
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1 Reactionbwe,
Thanks very much for the information re ACT lozenges.
Do you know: Is ACT gum also bad for teeth?
I use it every night before bed!
THANKS
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1 ReactionLemon also helps
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1 ReactionMy dentist told me regular sugarless mints weren’t good for my teeth. To only use the ones made with xylitol. Amazon had some that weren’t lemon or mint.
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3 ReactionsI just started using XyliGel and XyliMelts. They were recommended by someone in this forum. Previously I have used Biotene Mouth Gel. I have also used Oral-B Moisturizing Lozenges. I find they are all pretty good. I have to wear a mouth guard and I spread the gels in my guard and it helps so much. Hope this helps someone.
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4 ReactionsShogrens soul show up on your blood work
I just this week had a ENT surgeon take a biopsy of the salivary glands. Apparently this can give us a more definitive result for Sjogrens.
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2 Reactions