Sjogren's Syndrome?

Posted by di341 @di341, Mar 25, 2024

Hello,

Man, this aging process....... Thank you for taking time to try to help!

I have a positive ANA and run a higher CRP number, I have for many years. Other than Osteoarthritis, no other autoimmune diseases have been identified. My health is good over all.

Last month I had, what I refer to as a "flare". My whole body was in pain for over a week. I went into my PCP who I've had for decades. Once again she ran blood tests looking for clues.

My CRP had jumped from a previous high of 7 mg/L to 80 mg/L!!!!!!!!!

The only clue was the test for Sjogren's Ab. My result was Sjogren's Anti-SS-A was over 8.0, normal range being 0.0-0.9. The Anti-SS-B was normal range at less than 0.2.

My question is do you need both Anti-SS-A and B to have Sjogren's? Only my A is high. That in addition to a CRP of 80, which I know is very high.

Medicine is such a process of elimination!! Any thoughts you can share with me?

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Profile picture for synthiaMaine @synthiame

@synthiame The mycophenolate was prescribed to suppress the immune system, which is attacking and destroying the insulation (myelin sheath) around the autonomic and peripheral nerves. The hope is that it will slow the destructive process. It may, but not necessarily, have the added benefit of allowing some recovery. In my case the primary symptoms were numbness, tingling, hyper sensitivity, and shooting (electric-shock-like) pains in the feet and toes, as well as orthostatic hypotension (drop in blood pressure when standing). I've been on the mycophenolate for about 18 months. The shooting pain is noticeably less frequent, sensitivity to touch is a little less, and other symptoms of peripheral neuropathy are about the same. I'll be tested again at Mayo in June and find out if the orthostatic hypotension has changed.

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It’s my understanding that a positive SSA is kind of a slam dunk for Sjogren’s diagnosis. SSB by itself is not as specific for Sjogren’s and can also appear with other AI conditions like lupus. While SSA and SSB often appear together, a solo SSA weighs in heavily towards the Sjogren’s diagnosis-especially at such an elevation.

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Profile picture for jrkittel @jrkittel

@synthiame The mycophenolate was prescribed to suppress the immune system, which is attacking and destroying the insulation (myelin sheath) around the autonomic and peripheral nerves. The hope is that it will slow the destructive process. It may, but not necessarily, have the added benefit of allowing some recovery. In my case the primary symptoms were numbness, tingling, hyper sensitivity, and shooting (electric-shock-like) pains in the feet and toes, as well as orthostatic hypotension (drop in blood pressure when standing). I've been on the mycophenolate for about 18 months. The shooting pain is noticeably less frequent, sensitivity to touch is a little less, and other symptoms of peripheral neuropathy are about the same. I'll be tested again at Mayo in June and find out if the orthostatic hypotension has changed.

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@jrkittel I had neuropathy in my feet (I am a Sjogrens Syndrome patient), then it started to occur in both legs. I feel numbness in both legs from the knees down. Neurologist believes it is due to Sjogrens. He plans an EMG on my legs to find out if it is small nerve or large nerve and this will more clearly define the cause. After that, he plans a biopsy to further explore nerve damage.

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No you don’t need both my ssa was high my lab results said positive for Sjogrens just an fyi lupus along with rheumatoid arthritis is the sister disease. Normally if you test positive for Sjogrens you will test positive for one of the other ones.

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