Anyone have Sjögren's with seronegative labs?

YES. you can have Sjogrens without positive bloodwork(Seronegative Sjogrens). I am negative for all markers except for a a very high SP-1(Salivary Protein-1) . This is part of an early Sjogrens panel blood test that is not accepted by rigid Governing Rheumatology guidelines/rigid rheumatologists as evidence for Sjogrens. My understanding is about 30-40% of patients test negative for the Anti-SSA/Ro and Anti -SSB/La antibodies, and about 15% test negative for ANA, RF, anti-SSA, and anti-SSB markers( like me). Ocular testing(Schirmer's), salivary gland ultrasound are helpful, but lip biopsy is the definitive per a rheumatologist. I chose not to have the lip biopsy as I have multiple Autoimmune conditions, MCAS and HaT, and my immune system is hyper-reactive; and MY personal risks outweighed the benefit, and I tend to find an alternative. AS such I was not treated for 2 years, Understand too, that insurance companies are unlikely approve more advanced medications to treat this without definitive diagnostic proof(lip salivary biopsy). A new rheumatologist ordered a face MRI, and I have Grade II bilateral parotid gland damage. So, YES, you can be seronegative and have Sjogrens. Don't be afraid to advocate for yourself, keep looking for a provider who will listen. No matter WHAT your age; an improved quality of life for 1 year or 30 years is worth it!

DO NOT GIVE UP! Get a second opinion! I was told by PCP, and rheumatologist, I could not have Sjogrens as I was seronegative; ( all blood markers were -negative: ANA, RF, anti-SSA, anti-SSB, and CRP, and ESR were not elevated, I chose not to have a lip biopsy as I have Mat Cell Activation Syndrome, Hereditary Alpha Tryptasemia, seronegative RA, Eosinophilic Colitis, Duodenal Intraepithelial Lymphocytosis, Lichen Sclerosis, and my immune system. is highly hyper-reactive, and risk/benefit was not with it for me personally. I too lost have lost teeth, and have the classic Sjogrens symptoms. The only indication was a highly elevated SP-1(Salivary Protein-1) level, which is on an early Sjogrens blood panel not. recognized by established rheumatological bodies as evidence for Sjogrens, hence I went untreated for 2 years. A new rheumatologist. ordered a face MRI, and I have bilateral Grade II parotid damage, It took me 3 rheumatologists to get to this point. Listen to your instincts; get a second opinion. I spent 4 years trying to get a provider to listen to, 'something is wrong' despite labwork being normal. Covid/vaccine( I am not an anti-vaxxer) has affected many people's immune systems in ways we haven't seen before. I know its exhausting, but don't give up; if you can improve your quality of life for 1 year or 20 years its worth it!

CPAP machine( I am on BiPaP.) with humidification, Nighttime eye gel or ointment .These last much longer than drops, but can make vision blurry, so use only when going to bed. Anti-inflammatory medication 30 minutes before bedtime( if approved by provider), with small snack, hydrate (drink lots of water throughout day), stop in late afternoon so you are not up urinating all night. Mouth moisturizing rinse(Biotin, generic works just as well) right before you go to sleep, or xylitol moisturizing lozenges that go on your gums for all night relief. Warm or cool gloves for hands( whichever feels better for you), and the same for socks.(you can get these online) Keep room at a neutral temperature; not too hot or cold. Don't give up. Unfortunately after middle age I feel like we sometimes become invisible, and less important to listen to to many providers, Keep advocating for yourself no matter WHAT your age. Am improved quality of life for 1 year or 20 years is worth it! Feel better!

Yup, have to be our own advocate. My rheumatologist is now ordering more bloodwork. I like my Dr. but not him not getting the initial bloodwork is ridiculous. I made calls and moving forward.

@lablife10
So this is interesting
My Urticaria angioedema has kicked in and it’s terrible itchy burning arms hands the only thing that helps is Prednisone high doses. Using the Prednisone my eyes seem better my dry mouth at night not quite as bad. I did not realize how poorly I felt what a difference. Having Sjogrens
Sleep apnea diabetic is a challenge for sure. I started Ozempic and this has brought my BS numbers down which is great ! But everyone just remember when using Prednisone you have to taper off not cold turkey not good for the system.
I honestly think that the Covid vaccine was responsible for this autoimmune disease
Anyone else??

@lablife10 crazy how persnickety this pesky antibodies are!

@lablife10 thanks for the encouragement ! Yes at times I feel invisible but we have to keep trying

I am also seronegative for Sjögren’s and was diagnosedin 2004. A dry mouth specialist (Dentist) did a lip biopsy and confirmed definitively that I have Sjögren’s (Gold standard diagnostic test for Sjögren’s). I don't know what an ENT would do to help diagnose Sjögren’s, but an ENT could recommend products to help with dryness in the areas they treat. If your eyes are severely dry, gritty feeling, & blurry, it would be worthwhile to see an Opthomologist. He can check how well your tear ducts are working by doing a schrimer test (painless). In the meantime, the dental products sold over-the-counter are super helpful. I love the Biotene products & XyliMelts.