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  • Sjogren’s Syndrome and LEMS

    Posted by deborah-carpenter on November 15, 2023 at 2:45 pm

    Posted by deborah-carpenter on November 14, 2023 at 8:41 pm

    I recently was tested for Sjogren’s because of symptoms of dry eyes, mouth sores, paresthesia in hands and feet, which I thought were LEMS related. I tested negative for this syndrome as a differential diagnosis when I was first dx with LEMS in 2021. My ANA and SSA are now positive so apparently I have acquired it since then. My doctor says they often co occur. Can anyone tell me about their experiences with this condition, does a rheumatologist manage the condition, and what therapies do you use? Are LEMS therapies effective?

    Thanks so much for any insights

    Deborah Carpenter

    Ashley replied 4 months, 3 weeks ago 3 Members · 2 Replies
  • 2 Replies
  • heather

    November 17, 2023 at 5:27 pm

    I am just now learning more about this very issue – look up “primary immune regulatory disorder.” I am being treated by an immunologist who specializes in PIRD – we discovered that I not only have an immune deficiency, but I also have auto immune and auto inflammatory diseases, and it is a problem with immune disregulation. Catching the antibodies is extremely difficult. So, We have had to do high dose IVIG along with high dose prednisone (support AND suppress my immune system). Now we are going to try a slow transition to a DMARD to supress T-Cells (the driver of many auto immune conditions) in the hopes of regulating that aspect of PIRD. Cutting edge of science stuff – I am grateful to have an immunologist who knows about this!!! It took me three years to find her!!!

  • Ashley

    November 22, 2023 at 3:01 pm

    Hey @Deborah Carpenter

    I also have Sjogren’s and was diagnosed after my LEMS diagnosis. I’ve seen hematology in the past and see rheumatology currently and I was told that autoimmune diseases flock together. Once you develop one, you increase your chances of developing more unfortunately.

    After hearing the symptoms, you experience, it’s likely that you do have Sjogren’s, but IVIG can also cause false positives on an ANA test (since you are receiving other people’s antibodies). The test simply detects the presence of the antibodies and can’t tell where they may have come from.

    My rheumatologist says there aren’t any treatment options for Sjogren’s aside from managing symptoms. I have noticed a decrease in symptoms around the time I get IVIG and notice a flare as it’s wearing off. I also have another connective tissue disorder that my rheumatologist prescribes Hydroxychloroquine for and that has seemed to help with Sjogren’s as well.

    Hope this helps you! Let me know if you have any more questions! 🙂


    Sorry you are dealing with this as well! Thanks for the input from your immunologist! What DMARD are you planning to start? I would love to hear more about your experience after you are able to start it!

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