This section highlights key Sjogren's topics.
Please note that the topic "Systemic" is so important that it has a dedicated section rather than being listed with the other "Essentials". 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).
Sjogren's Advocate does not cover every important aspect of Sjogren's. More topics will be added over time. This website is meant to complement, not replace the excellent information provided by the Sjogren's Foundation.
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".
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.
Dysautonomia refers to any disorder of the autonomic nervous system. Most people with Sjogren's have some version of dysautonomia, even if it is mild. Autonomic disorders may cause or contribute to Sjogren's symptoms such as fatigue, brain fog, and GI motility problems. Because many clinicians remain unfamiliar with autonomic disorders, self-advocacy is key to getting care.
POTS is one of the most common types of dysautonomia seen in Sjogren's. A lot can be done to manage POTS and improve symptoms such as fatigue, lightheadedness, brain fog, etc. POTS symptoms may precede other Sjogren's features, including dryness.
This page reviews the symptoms experienced by POTS patients and explains how it is diagnosed. It offers specific handouts for clinicians, including detailed instructions for how to do a home standing test.
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.
Some patients have requested a Sjogren's Advocate page that lists all of the symptoms and what causes them. This is not realistic because Sjogren's symptoms often have multiple causes. Common symptoms such as fatigue, brain fog, and muscle pain have not been adequately studied, even though they are core disease feature.
This page provides a brief overview of signs and symptoms. To look up a specific symptom, type the term into into the search bar and click on pages that come up.
Symptoms vs. Signs
"Symptoms" are what patients experience subjectively. They often provide important clues about the disease. "Signs" are objective evidence such as blood tests, X-rays, physical exam findings, etc. Some symptoms are associated with signs, but this is not always the case. Likewise, some signs (even serious ones) may not produce obvious symptoms. This is why it is so important for patients to find a rheumatologist who is knows about the signs and symptoms that point to systemic Sjogren's features.
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".
Because there are many good treatments for sicca, Sjogren's Advocate focuses on systemic (non-sicca) manifestations.