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Anyone have Sjögren's with seronegative labs?

Autoimmune Diseases | Last Active: Oct 4 11:01am | Replies (68)

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Profile picture for lablife10 @lablife10

YES you can have Sjogrens and test antibody negative. I have tested. negative for the past two years other than a highly positive. SP-1(Salivary Protein-1) when I was initially tested. SP-1 is part of an early testing panel that is not recognized by established criteria/rigid. standards as definitive proof, I was told multiple times by different providers, I could not have Sjogrens without positive antibody tests,(even a rheumatologist), and that lip biopsy was required. I chose not to have a lip biopsy as I have MCAS/HaT/Seronegative Rheumatoid Arthritis/Eosinophilic Colitis/ Duodenal Intrapithelial Lymphocytosis/Lichen Sclerosis(thank you Covid for all of this), and my immune system is highly reactive. I was not treated, and now two years later, a new rheumatologist ordered a face MRI, and I have bilateral Grade II parotid gland damage. My understanding is about 30-40% of people can be anti-SSA/Ro and Anti SSB/La negative, and 15% of primary Sjogrens people can be quadruple negative for all standard markers, ( ANA, RF, anti-SSA, and anti-SSB) like me, but plese confirm those percentages. Alternatives to blood tests could be the lip biopsy, Ocular(Shirmer's test), salivary gland ultrasound, and other. Don't give up, and don't always take the first opinion; don't be afraid to advocate for yourself.

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Replies to "YES you can have Sjogrens and test antibody negative. I have tested. negative for the past..."

@lablife10 crazy how persnickety this pesky antibodies are!