Sjogren’s Disease: Autoimmune dry eye Part 2
Sjogren’s Disease: Part 2 – how it can affect us… Let me count the ways!
In a 2021 United States of America survey by the Sjogren’s Foundation, where they got 3,622 Sjogren’s afflicted patients from this country responding, the age groups who reported varied from 18-94 years of age. Over half believed they had symptoms of their Sjogren’s disease before the age of 35 years, with 16% having symptoms before the age of 18 – so this disease can start early in life! Over 60% had a family history of autoimmune diseases, so there appears to be a genetic predisposition (though clearly there are many cases where there doesn’t appear to be that obvious of a genetic link).
Importantly, while eye dryness was the number one issue for most, over 80% had at least one diagnosed nervous system-related health condition, which could include:
Anxiety or depression (50%)
Brain Fog (47%)
Neuropathy (45%)
Migraine (32%)
Fatigue (25%)
The Sjogren’s Foundation reported 20 clinical treatment trials underway, with 3 of them already in phase 3 testing (so looking near to being approved by the FDA for broader treatment of Sjogren’s Disease). As more treatment protocols become available, it will become increasingly important to accurately diagnose the disease, so it can be staged and properly treated. Treatment will commonly require a competent team approach, usually involving the dry eye specialist for detection and eye treatment, an oral surgeon coupled with a good oral pathologist to help with detection and treatments that may involve a diagnostic biopsy of the mouth’s saliva glands and perhaps opening the saliva ducts inside the mouth, dentists to take care of the frequent cavities and dental decay acquired from a dry mouth, and rheumatologists to aid in diagnosis, staging, and treatment plans related to Sjogren’s and to the many, often associated autoimmune diseases that can run in concert with it. Gastroenterologists, neurologists, pulmonologists (lung), nephrologists (kidney) and sometimes, endocrinologists (especially thyroid) and oncologists can also be needed - depending on the range and severity of the disease.
Diagnosis can be difficult, as blood tests are not always reliable and may miss it (though a positive major antibody test – the so called “Ro” - is considered diagnostic, it is sometimes not found in patients with active disease). Ultrasound of the saliva (the “spit” or “salivary”) glands, including the large parotid glands, may help point to the diagnosis as there are many classical findings (as can also be true for MRI, CT scans, and in the case of lymphoma – a relatively rare cancer that can be more common in some patients with Sjogren’s, then PET scans can be helpful) – but a biopsy of affected saliva glands is still considered the most definite way to diagnose if the blood tests are negative (and requires a good pathologist to “read” the results, as it is easy to over or under diagnose).
So far, unless a patient of mine has very poor “sprinkler system” output (as measured by a very low Schirmer’s test) as well as a history of a very dry mouth (like not being able to swallow a dry saltine-type cracker without water to wash it down), I generally don’t go looking for Sjogren’s with the blood tests - unless there is a poor response to standard initial treatments for their dry eyes. This is because so far, there has not been an acceptable protocol for treatment beyond the eyes – leading me to not go looking for a disease we don’t have a good “fix” for. Adding a lip biopsy to a negative blood test didn’t make sense for the same reason. That may soon be changing as the newer treatments become available, though any patient with severe disease will usually be detected early and referred to the appropriate specialists – as even the imperfect treatments available now are still better than allowing Sjogren’s to “run rampant” in a severely afflicted individual.
Future posts will elaborate on some of the ways Sjogren’s Disease can attack specific body parts apart from the eyes, and I think you’ll soon realize why a team approach is required – since Sjogren’s is so much more than a “Syndrome!” If you or someone you know has Sjogren’s Disease (often referred to as Sjogren’s Syndrome”), then please make sure they check the Sjogren’s Foundation website, since they offer invaluable information and they help keep us all updated on breaking news about this challenging disease.
https://sjogrens.org/living-with-sjogrens?gclid=CjwKCAiAxP2eBhBiEiwA5puhNcqJeHtH9tfIpr769Pb7jjS2_qGTgvtSpk0Q25Fv9dFHjMssbzuykBoC5REQAvD_BwE