Hello,
After many, many years and odd symptoms, I finally got a firm Sjogren's Syndrome diagnosis last year. Since then I've been able to look back and see how I've had Sjogren's for decades. I was also diagnosed with Cogan's Syndrome (which is rare) and now they're not sure on the Cogan's (thankfully, not a good problem to have).
My Sjogren's was diagnosed with a positive ANA blood test (done, oddly and thankfully by an Opthamologist). I have lymphoid hyperplasia in one of my eyes, dry eye, difficulty swallowing, GERD and dry skin, vaginal atrophy, hair loss, dry scalp severe tinnitus, dizziness.
In 2019 I developed cellulitis in my hand and arm and was hospitalized with Sepsis. It seemed so strange at the time. I do have lymphadema in my right arm from my breast cancer surgery...but the sepsis seemed extreme. It was my body overreacting due to the Sjogren's they feel. So........good to know I have Sjogren's and have a firm diagnosis. The Cogan's has been pulled back but was diagnosed with a blood test called a Heat Shock Protein Test. But hopefully Cogan's is off the table. It's a wait and see.
Since diagnosis last year I've had pretty much every body part tested (a Colonoscopy is up next, yippee). I feel my doctors were very thorough. You might consider understanding or asking for these tests and see what your doctors feel. ANA blood test, Dry Eye testing (also my doctors have me on two new dry eye treatments - Klarity Drops and Vevye Drops - stronger than Restassis, which I was on for decades). The new drops have improved my dry eye. In addition to the ANA test, my doctors do regular C Reactive Protein, ESR rates, CBC, White blood cells etc. I also had MRI's of my brain (I have one!), no issues there. The Brain MRI ruled out several other issues.
Throughout the Sjogren's workup I developed severe spinal pain and it was determined I have degenerative spine disease. So far physical therapy is managing that. I've recently developed severe knee osteoarthritis as well. Again, managing with PT for now.
The doctors put me on Prednisone tapers twice. Both times I felt better than I've felt for decades. All symptoms resolved, I actually lost weight (oddly) but my doctors don't want me on steroids long term, but they worked. Then they put me on Methotrexate and after just one month I developed horrible stomach issues. I had to quit using the Methotrexate after five months and am still dealing with the fallout for my intestines.
For now I'm trying very hard to reduce stress, eat better, exercise, follow my pt guidelines and use pain management techniques to hopefully reduce my body's overreaction to everything, especially medications. I can no longer use antibiotics and antivirals. My doctors have added a fibromyalgia type overresponse to my condition. Unfortunately Sjogren's is a patch, patch, patch condition. No real 'cure' but management of symptoms as they develop. I have found it quite frustrating and find the best way for ME to manage is to do my own reserach, keep a journal of my symptoms and hold my doctors feet to the fire. I am lucky to have a primary care doctor who has been incredibly supportive and knowledgeable, getting me to the right specialists and holding my hand throughout.
I was able to avoid the lip biopsy as my Sjogren's was so obvious. I am signed up to start a clinical trial later this year for dry eye that may give insight into treatment and care for that.
I HAVE A QUESTION FOR OTHER SJOGREN'S SUFFERERS - What if anything have you found to help with DRY SCALP???? (I am allergic to coconut and almonds, all tree nuts).....I'm looking for something that might help me sooth the pain, burning and itching on my scalp. I have absolutely no moisture on my scalp and my hair looks like dried straw.
I hope this helps. I'm happy to share additional info on the tests I've had so far and I'm very interested in hearing from others on tips you've found to manage the symptoms of the incredibly severe dryness. HUGS TO ALL