So I had a lip biopsy to confirm Sjogren's and despite two samples taken, six stitches, black/blue bruising and swelling, no mucous glands were found in the sample! The surgeon was baffled. Has anyone been through this? I don't recommend the biopsy. What a waste of time and I'm not about to have it done again. On the other hand, my lips are so parched dry all the time and I apply lip balm every hour. First blood test was SSB+ ANA+, second more "accurate test was SSB+, ANA-. I think its time to find a new Rheumy who doesn't just look at test results. I've been through two so far, though I guess there's really nothing that can help with my dryness. I don't have RA at this point, but my mother and sister have severe cases. I'm 47 and feel lucky so far, just have to deal with dryness.
Hi Polly! Sorry to hear that you went through this and still no formal diagnosis. If this rheumy won’t treat your symptoms without the positive lip biopsy, then I would encourage you to get a second opinion. Especially with your family history, the very least that you need and deserve is symptom treatment. While you’re at it, make sure that you speak with your dentist as well about this.
The Rheumatologist I was seeing started me on Plaquenil even though I didn’t have a lip biopsy. My ENT doctor who has performed many lip biopsies in the past told me that she no longer does this surgery because everyone of the surgeries were negative (it is very difficult to find enough of the glands needed to test for the white blood cell infiltrates) and all of her patients actually had SS. She also said that she felt it was not right to put people through the pain and risks of the biopsy. Additionally, her sister has SS, so she shared some of the things that have helped her sister. Plus she prescribed cevimeline. I feel so fortunate to have her as a doctor. I am ANA positive, SSA & SSB negative, and 3 high Sed rates results. I have learned from some doctors and from reading quite a bit of research on autoimmune illnesses there is a percentage of people who test negative although they have the symptoms and the illness. My rheumy said that I may also have RA (about 30% of people are seronegative). I am sorry for your difficulties to get the help you need. I am hoping things get better for you soon.
Polly I'm sorry you went through that. My traditional blood tests showed "nothing" for years. It wasn't until the eye doc ordered the Sjo test because my eyes weren't responding to any treatment that I was diagnosed. Thankfully my rheumy wasn't interested in doing a lip biopsy (I found my doc on try #3. LOL) There are lots of things to do to at least help the dryness, though I know there are times it is horrible. Please don't let the docs slowness discourage you from trying.