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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cblue | @cblue | Nov 28, 2023

In reply to @ruthblaze "Yes they have special blood work called inflammatory markers that indicate arthritis lupus and sjorgens" + (show)

Yes, primary care doc might do initial bloodwork looking for antibodies. I don't understand all the other blood work my rheumatologist does. She ran test when I had vasculits, swelling in fingers etc.. and after my lip biopsy diagnosis. She ran test for Rhumatoid Factor (sp?) I guess Sjogen's has some overlapping symptoms with RA (???) My blood work looks good. I feel awful. Not sure what to say, apparently this is not uncommon ??????

cblue | @cblue | Nov 28, 2023

In reply to @jmb73 "Your blood work can show or not show Sjogren's. Sometimes my SSA, SSB tests are normal..." + (show)

Interesting, someone else I know suggested medical marijuana for the pain. I don't yet have a pain specialist. I wouldn't want to smoke anything, but they must have edibles. Gabapentin is not helping, nor is anything else.

jmb73 | @jmb73 | Nov 28, 2023

My lung doc said that vaping was worse than smoking so stick with the edibles. That is what I use.

cblue | @cblue | Nov 29, 2023

In reply to @jmb73 "Your blood work can show or not show Sjogren's. Sometimes my SSA, SSB tests are normal..." + (show)

What type of doctor prescribes medical marijuana? I don’t have a pain doctor yet, but gabapentin not working ….. not sure what other realistic option there is. I hope this is an appropriate question to ask that doesn’t seem to be an option for private conversations on this blog

jmb73 | @jmb73 | Nov 29, 2023

In Florida, there are specialized doctors who are trained to determine if you are eligible for Medical Marijuana. They are regulated by the State and once you are eligible, you apply to the State for your medical marijuana ID. Then you can buy it at any of the dispensaries. If your state doesn't approve Medical marijuana, then you can buy it on line without the THC. Charlotte's Web is used by many people. Most of it's products are made of hemp.
I hope this helped.

hooper3149 | @hooper3149 | Nov 29, 2023

My doctor recommended a saliva stimulator called "Salitron Saliwell" because I am no longer producing any saliva. Has anyone tried this instrument and what were your results. I haven't been formally diagnosed with Sjorgen's but my body is sure acting like I have it! Thanks for any responses.
Nicole H.

Becky, Volunteer Mentor | @becsbuddy | Nov 29, 2023

In reply to @hooper3149 "My doctor recommended a saliva stimulator called "Salitron Saliwell" because I am no longer producing any..." + (show)

@hooper3149 here is a link to scientific studies done on instruments like you mentioned.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6714424/. It can be very good at helping with the problems caused by a dry mouth.
There is even s photo of the smaller mouth-size instrument. You might talk with your doctor again and try it.
Let me know if you try it!

frances007 | @frances007 | Dec 1, 2023

in reply to @eileenb1022 Interestingly enough, I found this article last night, and you might want to check it out.
https://www.news-medical.net/news/20231123/Saliva-substitute-from-University-of-Leeds-scientists-offers-major-relief-for-dry-mouth-conditions.aspx
I too have this problem, and recently saw a new rheumatologist after my former one, now a friend, reviewed my medical records and came up with a diagnosis of scleroderma limited. The "new" doctor did not agree with my friend's findings and ran some labs, while admitting that a negative result did not necessarily mean that I do not have this disorder. When the labs did come back negative, I pressed her further and sent he a link from the NIH which discussed that a blood test alone for many autoimmune diseases was insufficient to make a correct diagnosis. Of course the "new" doctor shut down the conversation and told me to discuss the issue with my PCP, but I already know where that discussion will go. Best of luck

martita | @martita | Dec 1, 2023

Because of the pain, I wonder if your rheumatologist will find you have arthritis which can also lead to sjogren's. I have RA and developed sjogrens and started treating with zxlitol melts at night and dry eye eye drops throughout the day. I started a very anti-inflammatory diet and started drinking a lot more water (10-12 cups) bc I was not drinking much. After 5 months I realized that the need for eye drops diminished, I haven't used now for at least a month even at night. I still use the dry mouth melts at night. I hope this helps. I cannot believe how much better I am on the anti-inflammatory diet (I bought books and watched videos) and I highly recommend anyone willing to give it a try. #1 for me has been no refined sugar or added sugar in products. You can make your own sweets with coconut sugar, monk fruit sugar, stevia, and erythritol. Or just eat natural foods like fruit or dates etc.

martita | @martita | Dec 1, 2023

In reply to @frances007 "in reply to @eileenb1022 Interestingly enough, I found this article last night, and you might want..." + (show)

If you do have scleroderma, I have a friend who did also but cured it through addressing her gut microbiome issues. It was a very stick diet for a while, but her tight shiny skin is now very soft. The doctor said she no longer had scleroderma. This was about 4 years ago and she is still healthy at 78. There are many videos online and books about the gut or microbiome to get you started.