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Sjogren's Syndrome?
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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Thanks so much! I will check with my Rheumatologist about the medications. I know Plaquenil can have side effects with long term use for the eyes, but didn’t know about leg pain. Hope the Octagam works for you!
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2 ReactionsThe doctor aka rheumatologist had me see an ENT and get a lip biopsy since only one was positive on me. They take four saliva glands and send them off for biopsy. I got my results back confirmed Sjogrens. The procedure took less than three minutes. They numb your lip take the biopsy and two stitches.
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4 Reactions@cpy , BINGO on the cataract clue. Wow, I would have never thought about that. I too have all the symptoms but remain Seronegative. Exact experience with the cataracts though. Thanks for sharing!
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3 ReactionsSorry I was just diagnosed with sjogren's but I know it started in September 2025.The only gave me pilocarpine for inducing saliva. Outside of that I don't have any meds to help it. I just got off methotextrate for RA but just changed to Rinvoq 2 weeks ago. Sofar feeling better. Any meds out there for Sjogren's??
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1 Reaction@synthiame
My rheumatologist favored hydroxychloroquine (Plaquenil) which is supposed to address joint and muscle pain and fatigue. However. Sjogren's can be progressive and damage organs or impede bodily functions. In my case it is destroying nerves, resulting in peripheral and autonomic neuropathy. My neurologist at Mayo talked to the rheumatologist and recommended that he prescribe mycophenolate mofitil (Cellcept) to suppress the immune system and prevent or slow further damage, in lieu of hydroxychloroquine. He agreed to do that. Another option the neurologist said was available in intravenous immunoglobulin (IVIG). I should mention that the prescription for mycophenolate mofitil is "off label" for Sjogren's, meaning that insurance won't cover it. It would cost in excess of $800 per month, but with Good Rx it's $85 for 90 days at CVS.
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2 ReactionsI should have mentioned that mycophenolate mofitil is a drug that is used to prevent rejection in heart, kidney, and liver transplants.
@jrkittel so is this helping with joint pain or your whatever symptoms you're having?(Cellcept)?
@synthiame
Cellcept or mycophenolate is immunosuppressive drug. It is used to prevent transplant rejection, and in systemic sclerosis to reduce disease progression and ILD. In some cases, to reduce autoimmune peripheral neuropathy. It is not generally used in rheumatology for arthritis, or bone pain.
Has anyone used Myfortic (Mycophenolic Acid) in lew of Cellcept or generic mycophenolate mofetil?
These are similar drugs, but not the same. Cellcept is a prodrug, that is converted by human body into mycophenolic acid, its active form. Myfortic is already in the form of mycophenolic acid - more bio available and enterically coated tablet with less GI toxicity. However, Cellcept is more prescribed, although it is causing more of GI distress. Trying to understand the rational.
@altabiznet Thank you