1/n Sjogren’s is no more a sicca disease than systemic sclerosis is a skin disease. Sjogren's disease (SjD) is a serious systemic disease associated with ↑mortality and ↓↓ QoL. It can impact every part of the body.
A 🧵every rheumatologist should read. 2/n It is time to discard the outdated, disproven notion that Sjogren’s is primarily a sicca syndrome.
Everyone with Sjogren’s has a systemic disease, not 30%, 50% or even 70%.
There is no “sicca-only” version.

#Sjogren’s is not rare. It is about as common as RA, but mostly undiagnosed. Prevalence estimates vary widely, from .1% to 3 %. Low estimates are derived from registries that do not account for underdiagnosis, under-reporting, and Sjogren’s w/ another AIRD. 1/18 About 1% of the US population has #Sjogren’s. It is a neglected disease, despite undeniable evidence that it is a serious, systemic disease. The “rare, nuisance sicca disease” paradigm remains deeply entrenched, even among some rheumatologists. 2/

https://twitter.com/SarahSchaferMD/status/1550897555126382592

#Sjogren’s patients often have difficulty finding the care they need, especially when it comes to systemic manifestations. Many are told that they have the “glandular version”, despite undeniable evidence that Sjogren’s is a serious, systemic disease.
1/ There is no “glandular version” of Sjogren’s. You can find systemic features in almost every patient- if you look for them.
“The evaluation of the systemic manifestations of SS are not properly incorporated into clinical practice”.
2/
pubmed.ncbi.nlm.nih.gov/35650656/

"What’s more devastating is that the next three struggles the researchers identified—constructing an explanation for suffering, negotiating with the health care system, and proving legitimacy—are all toxic side effects of modern medicine" 1/

https://twitter.com/DrChadJohr/status/1542546664732467200

Sjogren's patients are often treated as if their symptoms could not be that bad; many physical symptoms are psychologized, especially autonomic and other neuropathies which are labeled as anxiety or FND. Patients often feel abandoned or gaslit. #dysautonomia
2/

It can take years, even decades, to get a Sjogren’s diagnosis. Some rheumatologists insist on positive antibody tests. Many do not understand the limitations of diagnostic tests, including SSA and the minor salivary gland biopsy (MSGB).
1/18 The MSGB is one of the tests in the Classification Criteria (CC). Rheumatologists may confuse CC with diagnostic criteria and insist that CC be met for a Sjogren’s diagnosis. Many w/ Sjogren’s do not fulfill the CC, especially early on. There are no diagnostic criteria.
2/