Promoting optimal care for Sjogren's, a common, serious, systemic disease.
SJOGREN'S IS SERIOUS
Key Concepts
Sjogren's patients live with a high burden of illness.
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Sjogren’s is always systemic. Sjogren's should never be viewed as a nuisance sicca (dryness) disease. Both sicca and systemic (non-sicca) features may cause irreversible damage and disability.
Some systemic manifestations and comorbidities can result in premature death.
When doctors don’t understand that Sjogren’s is serious, they may not be motivated to diagnose, monitor, and treat the disease.
Because many doctors, including some rheumatologists, are not up to date on Sjogren’s, patients may need to learn a lot about Sjogren’s and advocate for their specific healthcare needs.
It is important for patients, with the guidance of a primary care provider or rheumatologist, to put together a knowledgeable team of doctors who can provide specialized, comprehensive care based on their individual needs.
Read more about the core Sjogren's health care team.
Sjogren's patients carry a high burden of illness.
This can be explained using the “5D” model described by Parisis et al (153).
1. Death (Mortality)
While most people with Sjogren’s live a normal lifespan, an estimated 10% die from direct Sjogren’s complications such as lung disease or lymphoma (3, 47). Others die prematurely from comorbidities such as cardiovascular disease and infections (61, 153).
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Most people who get lung disease or lymphoma from Sjogren’s
do not die from these complications,
especially when they are detected early and are properly managed.
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The impact of comorbidities can be minimized with preventive care and early intervention.
2. Disease Activity
Disease activity refers to both ongoing progression and the occurrence of new disease manifestations. Some disease activity is not associated with obvious symptoms but can be detected by ongoing monitoring. Disease activity may sometimes be reversed or slowed by good management. Unchecked progression may cause permanent damage and worsened outcomes (3, 89).
Assessing disease activity in Sjogren’s is complex and nuanced.
There is no one test that measures overall disease activity or severity.
Notably, CRP, ESR, and antibody titers (ANA, SS-A, etc.)
DO NOT correlate with disease activity (42,165).
These tests should never be used to assess or follow
the overall disease status of Sjogren’s.
3. Damage accrual
Permanent loss of structure or function may impact almost any part of the body. A few examples of irreversible damage from Sjogren’s include loss of teeth, severe corneal damage, scarred lung tissue, or loss of sensation from nerve damage.
4. Discomfort
Unpleasant or painful symptoms reduce the quality of life of most Sjogren’s patients. Common reasons for discomfort include flu-like fatigue, muscle and joint pain, nausea, difficulty swallowing, chronic cough, and neuropathy pain. These features, particularly fatigue, are often overlooked or dismissed despite their devastating impact (161).
Health-Related Quality of Life (HRQOL)
HRQOL reflects discomfort and disability.
Surveys show that HRQOL symptoms, especially fatigue and brain fog,
are viewed by Sjogren’s patients as their highest priority unmet need.
Sjogren’s patients consistently score lower on HRQOL measures than people with closely-related diseases such as rheumatoid arthritis or systemic lupus erythematosus (27, 43, 94)
Sjogren’s management should aim to improve HRQOL and to reduce disease activity, progression, complications, and comorbidities.
Sjogren's is a serious disease that requires active management.
Sjogren’s patients usually experience ongoing disease activity. This sometimes results in permanent loss of function and irreversible disease damage. Sjogren’s tends to progress slowly, although sudden changes in disease status may occur.
Despite the high burden of illness, the quality of Sjogren’s care routinely falls short. It is important for patients to learn as much information as they can about their disease. By understanding their disease better, patients can seek out a team of knowledgeable clinicians and advocate for the care they need.
Key Links and Self-Advocacy Tools
See Myths #3 and #4 on the MYTHS ABOUT SJOGREN'S page for more information and self-advocacy tools. The persistence of the "Sjogren's is mild" myth contributes to inadequate Sjogren's care.
Updated 01-15-2024