Sjögren’s Syndrome: how do you manage the symptoms?

Posted by eileenb1022 @eileenb1022, Feb 23, 2023

Hi
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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@tullah

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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Yes, sometimes it does not show up in your bloodwork and a biopsy of your salivary glands is more definitive.

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I am sorry that you were going through all this. I know all too well, but it’s like to live with chronic pain you know it’s interesting because my rheumatologist is telling me he doesn’t think I have Sjogren’s or any auto immune diseases, but my immunologist who runs extensive tests that are sent out of states told me that I have a marker for Sjogren’s. My symptoms are mild . Do you have an immunologist in your town that you could go to? Mine found that my IGG levels were very low and I take subcutaneous Plasma injections each week for that, but they are supposed to help with pain and if yours is autoimmune I would imagine it would help you. Mine ipin caused by a lot of osteoarthritis and degenerative disc disease etc so not much help in that area.

Good luck to you…

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@cblue

Yes, sometimes it does not show up in your bloodwork and a biopsy of your salivary glands is more definitive.

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But I had it done by an oral pathologist. It was a small procedure.

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@cpd54

My 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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Can you share which weren’t mint or citrus/lemon?

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@leigh17

I am sorry that you were going through all this. I know all too well, but it’s like to live with chronic pain you know it’s interesting because my rheumatologist is telling me he doesn’t think I have Sjogren’s or any auto immune diseases, but my immunologist who runs extensive tests that are sent out of states told me that I have a marker for Sjogren’s. My symptoms are mild . Do you have an immunologist in your town that you could go to? Mine found that my IGG levels were very low and I take subcutaneous Plasma injections each week for that, but they are supposed to help with pain and if yours is autoimmune I would imagine it would help you. Mine ipin caused by a lot of osteoarthritis and degenerative disc disease etc so not much help in that area.

Good luck to you…

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Yes, I try to find moments when I can do things, but no one specially, my rheumatologist understands or cares that I’m in chronic pain. I’m hoping that’s because this is a flare and that it’s some point it will calm down. Am I being unrealistic Venus Williams went back to tennis ??

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Hi, just a comment on dry eyes: I do not have Sjorgen's but do struggle with dry eyes. I had the plugs in my tear ducts to my nose and it helps a lot.

I found the OTC eye drops that work best had Glycerine, Linseed oil and Castor oil along with the other ingredients (Sodium carboxymethylcellulose, Polysorbate). It is sold in South Africa under the name Optive Omega and is preservative free.

Please do consult with your medical specialist before taking these.

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@ruthblaze

Shogrens soul show up on your blood work

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Would this be a specific bloodwork?

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Yes they have special blood work called inflammatory markers that indicate arthritis lupus and sjorgens

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Your blood work can show or not show Sjogren's. Sometimes my SSA, SSB tests are normal and sometimes they are very high. I have had Sjogren's for over 30 years and my PC doc agreed that once you are diagnosed with it, it never goes away. So, it's crazy to keep testing for it. My rheumatologist said that they only treat the symptoms until - hopefully - a cure is found. For the pain, I take medical marijuana. I use the 1 THC to 1 CBD and take 5 mgs as needed but no closer than 5 hours apart.
Hope this helps

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@annewoodmayo

bwe,
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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Sorry, but I don't know re: ACT gum. At bedtime I use two Xylimelts along with a spray of Lubricity before I turn out the lights. (Plus my eye gel etc.)
One product the oral medicine doc recommended to alter acidic pH of mouth was Basic Bites. He also told me I could make a baking soda rinse with 1/2 to 3/4 tsp of baking soda to a cup of water. Rinse for 30-60 seconds and spit out.

Am not a tech guru so excuse my primitive way of sharing a citation. Below are two article I found just by searching on Google. There is public access to these, so if interested, just type citation in your search engine.

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