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Sjogren's Syndrome?

Autoimmune Diseases | Last Active: Oct 25 8:44am | Replies (12)

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@esgsf

Agree with all the above comments about being seronegative, and still have Sjogren’s. In my case I had all the physical symptoms but the SSA and SSB were negative. I lost my salivary glands in my submandibular area and had a sever hemorrhage due to dry eyes, premature cataracts, and my lip biopsy was positive for Sjogren’s but below the 1.0 threshold. We kept looking for the cause and found my ANA was abnormal, C4 complement was abnormal and I was suffering from esophageal spasms and constant choking. My Rheumatologist ran an early Sjogren’s test and it was positive and we started Plaquenil (hydroxychroloquin) as a first treatment. It took about 4-6 months to take effect but it has been very effective on many of the symptoms. I did get very ill with a bronchial infection last flu season and we kept testing and found that along with the Sjogren’s, I have selective Primary immunodeficiency, IgM and Rheumtoid arthritis. I started monthly IVIG 5 months ago and get infusions of Octagam every month. I am finally feeling better and many of my symptoms have been getting better, or at least not getting worse. My adult daughter was showing many of the same symptoms and when she was tested for early Sjogren’s she showed the highest abnormal score ever recorded. She has been started on Plaquenil and after 4 months is finally getting some relief from symptoms. But she too has other autoimmune conditions being assesses. Apparently they often come in 2-3 at a time and medications can work for a while and then they stop working and other treatments have to be tried, My heart breaks for what you are going through and I hope some of our shared journeys can help you. So many practices are not fully trained in diagnosing Sjogren’s and much damage can happen quietly, with permanent loss of glands throughout your body, and organ involvement and damage if not treated aggressively. Hope this helps you.

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Replies to "Agree with all the above comments about being seronegative, and still have Sjogren’s. In my case..."

I also have Sjogren's and have been on Octagam for over a year.
my rheumie took me off plaquenil as she felt the IvIg should be sufficient. I also have muscle wasting and loss of balance which seems worse. Sence the plaquenil has a type of leg pain associated with it, she didn't want it clouding the issue. You might ask your rheumie about it.