Promoting optimal care for Sjogren's, a common, serious, systemic disease.
ABOUT SJOGREN'S
This section reviews the fundamental characteristics of Sjogren's disease.
This page shows why comprehensive Sjogren's care always goes beyond sicca.
Clinicians must understand that Sjogren's is a serious, multisystem disease in order to provide comprehensive care. Sjogren's is never limited to sicca (dryness).
A basic introduction to Sjogren's disease.
Complex
Sjogren's is challenging to research, diagnose, and treat because there are so many versions or "subtypes" of the disease. Researchers are just starting to study this. They hope to find more effective treatments based
on disease subtypes. This page helps explain why Sjogren's patients can look so different from one another and why a treatment that works for one patient may not help another.
Common
Sjogren’s impacts about 3-4 million people in the U.S., or about 1% of the population. This is on par with the number of people with rheumatoid arthritis (RA). Like RA, Sjogren's is a serious systemic disease. Yet most people have never heard of Sjogren's and many clinicians have not been trained to recognize typical disease features. People with Sjogren's often live for years with inappropriate labels such as fibromyalgia. Some are misdiagnosed with other rheumatic diseases. It is likely that many never get diagnosed. This page explains why so many people with Sjogren's remain "under the radar".
Serious
While sicca (dryness) is important, the most disabling Sjogren's features are usually caused by systemic manifestations. Sjogren's may actually be life-threatening; about 10% of Sjogren's patients die directly from the disease. Serious organ involvement and neurologic manifestations are far more common than previously thought. Quality of life and function are compromised in most patients, largely due to severe fatigue, rather than dryness.
Mortality
Sjogren's is associated with increased early mortality, both from direct and indirect causes. Learn about the causes of premature mortality in Sjogrens. Some of these can be prevented or reduced by ongoing monitoring and early intervention.
Systemic
Sjogren's is associated with increased early mortality, both from direct and indirect causes. Learn about the causes of premature mortality in Sjogrens. Some of these can be prevented or reduced by ongoing monitoring and early intervention.
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Sicca
Sicca (dryness), while important, is just one of many Sjogren's features. Because Sjogren's is always systemic, it should never be referred to as "sicca syndrome".This page explains sicca basics and links to resources such as the Clinical Practice Guidelines, Oral and Ocular (eye).
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Because there are many good treatments for sicca, Sjogren's Advocate focuses on systemic (non-sicca) manifestations.
Comorbidities are diseases or conditions that occur at higher rates in people with Sjogren’s than in the general population. Comorbidities can be divided into two major categories: General Comorbidities and Immune System Comorbidities.
Immune Comorbidities
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Learn about the immune mediated diseases that may be associated with Sjogren's disease. Approximately 50% of people with Sjogren's have at least one additional immune-mediated disease.
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Common immune comorbidities include rheumatoid arthritis, systemic lupus erythematosus, Hashimoto's thyroiditis, celiac disease, and diseases in the spondylitis family.
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An important part of Sjogren's care includes screening and/or monitoring for these diseases.
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When Sjogren's disease co-occurs with another autoimmune or rheumatic disease, it should not be called "Secondary Sjogren's".
General Comorbidities
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Learn about general comorbidities, which are the non-immune mediated diseases and conditions that occur at increased rates Sjogren’s patients.
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Common general comorbidities include cardiovascular disease, osteoporosis, infections, sleep disorders, and others.
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Cardiovascular disease and infection contribute to premature mortality in Sjogren’s.
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Comorbidities are not caused directly by the Sjogren’s disease process. Therefore lymphoma, fibromyalgia symptoms, Raynaud’s and a multitude of other disease features are not listed as general comorbidities.
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An important part of Sjogren’s care includes screening and monitoring for both general and immune comorbidities.
Updated 03-04-2023