Sjogren’s is common. The National Arthritis Data Workgroup (NADW) estimates that about 1 % of the US population has Sjogren’s. This corresponds to 3-4 million people, most of them adult women. This number is a bit higher than NADW’s estimated prevalence of RA. It is harder to pin down exact numbers for Sjogren’s due to long delays in diagnosis and problems with misdiagnosis. Most patients remain undiagnosed, for multiple reasons.
Who gets Sjogren’s? 90 % of Sjogren’s patients are women, typically diagnosed in their 40s and 50s. Many of these patients remember symptoms that started decades prior to diagnosis. Sjogren’s is probably not rare in younger people, just rarely diagnosed! Because Sjogren's does not go away, the prevalence is highest in the elderly.
Sjogren’s is serious. Any organ such as the lungs or kidneys can be involved. Neurologic and gastrointestinal manifestations are very common. 5-10 % of patients develop lymphoma, a direct complication of the disease. Organ involvement and lymphoma are treatable, but can be life-threatening. (24, 30)
Sjogren’s has many faces. Each patient has their own unique combination of symptoms. The presentations are so varied that the diagnosis is often missed.
Comorbidities: Sjogren’s patients are at increased risk for other health problems such as serious infections, cardiovascular disease, osteoporosis and other conditions. A significant number of patients also have a second autoimmune disease.
Sjogren’s may profoundly impact quality of life. (27) 70-80 % of patients have disabling fatigue. (26) Most report widespread muscle and/or joint pain. Visual impairment and severe dental decay are common complications of sicca.
A wide spectrum of severity
Some patients are able to live a fairly normal life with Sjogren’s. Others are too disabled to work or participate fully in home or social activities. Most patients probably land somewhere between these two extremes. Symptoms tend to fluctuate over time, often unpredictably.
Much basic research is needed
Despite much progress, there remain huge gaps in basic research. Clinical studies still do not include all types of Sjogren’s patients. Although the 2016 Classification Criteria help standardize research populations, they do not solve the problem of “missing patients.” Those with earlier or milder disease are typically undiagnosed and therefore missing from the studies. Also missing are many of the sickest patients with organ involvement: they are frequently misclassified as having another connective tissue disease.(23) The lack of truly representative samples of patients in research studies means that we still do not fully understand the natural history of Sjogren’s. While there are clues, we do not have strong data to show how early treatment impacts outcomes.