HOW TO MONITOR SJOGREN'S
Key Concepts
This page introduces the ONGOING CARE blog series, which focuses on the critical, yet often neglected, area of systemic (non-dryness) Sjogren's manifestations.
Sjogren’s is a complex and unpredictable disease. It does not progress through an orderly set of stages.
Regardless of initial presentation, nearly every Sjogren’s patient has, or will develop, one or more systemic (non-sicca) manifestations during the course of their disease.
The lack of standardized care and formal monitoring guidelines for Sjogren's, coupled with inadequate clinician education that often mischaracterizes Sjogren’s as primarily a sicca disorder, leads to widely variable patient care.
Regular monitoring for a wide range of systemic manifestations, which often do not present with obvious or distinct symptoms, is crucial for assessing individual disease burden in Sjogren's.
Early identification and treatment of systemic manifestations allows for intervention during a period when treatments are most likely to be effective. Timely treatment can improve quality of life, reduce disease progression, and in some cases, can be lifesaving.
When clinicians diagnose their patient with a sicca-limited version of the disease (which does not exist), systemic manifestations are overlooked and left to progress unchecked, sometimes causing irreversible damage.
Sjogren's Care Is Not Just About Treatments
You can’t treat a condition if you don’t diagnose it.​
You can’t diagnose it unless you look for it.
You won’t look for it if you don’t know Sjogren’s can cause it.
To get the most out of this page, please review Tips for Reading Sjogren’s Advocate.
Introduction
Nearly every Sjogren’s patient has, or will develop, one or more systemic (non-sicca) manifestations during the course of their disease (38, 266, 267). This critical information has not been communicated to clinicians or patients. The reasons for this will be addressed in more detail in future posts of the blog series, ONGOING CARE.
Sjogren's is a complex and unpredictable disease that can cause significant damage without readily apparent symptoms. Regular monitoring for a wide range of systemic manifestations is crucial to assess individual disease burden and guide appropriate management.
Clinicians who practice based on the myth that Sjogren’s is primarily a sicca disease are unlikely to provide comprehensive monitoring for systemic manifestations of Sjogren’s. Sjogren’s is never “just sicca” and not every person with Sjogren’s has sicca (3, 164, 232). The most common systemic manifestations of Sjogren’s involve the joints, lungs, nerves, and gastrointestinal system, each of which impact more than half of patients. See Signs, symptoms, and manifestations to learn why manifestations are not the same thing as symptoms.
Comprehensive Sjogren’s care addresses systemic manifestations, comorbidities, sicca, and other factors impacting your health and wellbeing.
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SYSTEMIC manifestations, the most important and most neglected aspect of Sjogren’s care, are the focus of this page.
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SICCA is present in most, but not all people with Sjogren’s. Please see the Sjogren’s Foundation for sicca information and resources. Sjogren’s Advocate focuses on systemic manifestations.
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COMORBIDITIES, both immune and general, contribute to the burden of disease and early mortality associated with Sjogren’s. Monitoring for comorbidities will be addressed in the blog series, ONGOING CARE. ​​
​PLEASE NOTE: This is not medical advice.
The information on this page and the rest of Sjogren’s Advocate
is intended to help patients communicate with their clinicians
about comprehensive monitoring that fits their unique circumstances.
See the DISCLAIMERS page for more information.
Why monitor for the systemic manifestations of Sjogren’s?
Almost every Sjogren’s patient, including those who are SSA-negative, will experience one or more systemic manifestations during the course of their disease (38, 266, 267). New systemic manifestations can emerge at any time, and others may improve or worsen, necessitating ongoing monitoring (271).
Early detection of the systemic manifestations of Sjogren’s through monitoring allows for timely intervention when treatments are most likely to be effective. This is essential because new manifestations can arise at any time, including "silent" manifestations that do not present with obvious or distinct symptoms. Timely treatment offers the greatest opportunity to slow disease progression and improve long-term outcomes, including quality of life. ​
Why do clinicians continue to focus on sicca and overlook systemic manifestations?
The fundamental reality that Sjogren’s is a serious systemic disease has not been communicated to clinicians. Despite undeniable evidence that Sjogren’s is a serious systemic disease, it is frequently mischaracterized as primarily a dryness disorder, a deeply ingrained misconception that remains widespread in the medical community. The inaccurate “mild sicca disease” paradigm is perpetuated by many medical educators and reinforced by mainstream medical websites such as the Mayo Clinic, Cleveland Clinic, and Penn Medicine.
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Misconceptions about the fundamental nature of Sjogren's, including the underestimation of systemic involvement, are perpetuated by influential organizations such as the American College of Rheumatology (ACR). The ACR’s Rheumatology for Primary Care website, incorrectly states that systemic involvement impacts only 40% of Sjogren's patients. The ACR’s website also fails to acknowledge that at least one in five patients presents with systemic manifestations and no obvious sicca.
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Persistent myths about Sjogren's, coupled with inadequate clinician education and the absence of clear monitoring guidelines, contribute significantly to the underdiagnosis and inadequate care. Many systemic manifestations are overlooked, downplayed, or mistakenly attributed to psychological factors. The Sjogren's Foundation provides valuable, up-to-date information and should be a primary resource for clinicians.
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For a more in-depth analysis of why the medical community, including many rheumatologists, misunderstand Sjogren’s, and what must be done to change this, see MYTH-BUSTING FOR RHEUMATOLOGISTS and my Healio Rheumatology article, 'My own diagnosis was delayed’: Sjögren’s myths overshadow multi-system manifestations
​Ongoing monitoring for a wide range of systemic manifestations is necessary to assess each patient’s unique disease burden and adjust management accordingly. Sjogren’s is a complex multisystem disease that does not follow a predictable trajectory. The spectrum of systemic manifestations varies widely among individuals and over time. There are no shortcuts to this multi-system approach and no single test that can accurately determine overall disease activity or severity.
Monitoring can detect invisible damage. A significant number of systemic manifestations of Sjogren's may not cause symptoms, especially early on. Others produce subtle or non-specific symptoms that may go unnoticed by patients and clinicians. This can lead to a false sense of stability, even when significant internal damage is occurring.
Sjogren's stands alone among common rheumatologic diseases in that many rheumatologists remain unfamiliar with the current understanding of the disease.
Practical insights and tips for monitoring systemic manifestations:​
1. Every Sjogren’s patient, regardless of symptoms or antibody status (e.g., SSA, SSB), should be monitored for a wide range of systemic manifestations. Each organ and system must be monitored and assessed separately to determine health status and guide management.
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2. There are no shortcuts. There is no “dipstick test” for Sjogren’s that determines overall disease activity or severity (how sick you are). (214, p.180)
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3. There is no one-size-fits all approach to Sjogren's care. Because patients vary widely, monitoring frequency and tests beyond the basics must be individualized based on the unique needs, risk profile, and overall health status of each patient.
4. Sjogren’s is a systemic inflammatory disease, regardless of ESR and CRP values. ESR and CRP do not reflect disease activity or overall disease burden. However, these tests are a useful part of monitoring for reasons explained on Sjogren’s and Inflammation Part I and Sjogren's and Inflammation Part II.
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5. Antibody titers (especially SSA, SSB) do not correspond to disease activity (118) and are rarely helpful for monitoring. In patients who have a positive ANA, SSA and /or SSB at diagnosis, repeat testing or monitoring antibody titers is not generally recommended, although it may be useful in select circumstances, such as determining the risk of congenital heart block in women who are pregnant or planning to become pregnant.
Monitoring Sjogren’s goes beyond simple lab tests.
The examples below are for the purpose of illustration and are not comprehensive.
MONITORING FOR THE SYSTEMIC MANIFESTATIONS OF SJOGREN’S INCLUDES:
1. HISTORY
For example: patient’s symptoms, changes in health status, past medical history
2. PHYSICAL EXAMINATION
For example: listening to the heart and lungs with a stethoscope, inspecting skin and joints
3. SCREENING TESTS
Screening tests are used to identify risk of disease in people who don’t have symptoms. Occasionally, screening tests can help support a diagnosis.
For example, a complete blood count (CBC) with differential to look for low blood cell counts (cytopenia), which rarely cause symptoms but are important for clinicians to know about.
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4. DIAGNOSTIC TESTS
Diagnostic tests are used to confirm a diagnosis in symptomatic people or to investigate a positive screening test. However, some systemic manifestations, such as certain skin rashes or Raynaud’s phenomenon, can be diagnosed without special tests because they are observable.
For example, a skin biopsy can be used to diagnose small fiber neuropathy in a person experiencing burning pain; an X-Ray, MRI, or musculoskeletal ultrasound can detect signs of inflammatory arthritis in a patient with painful joints.
5. ASSSESSMENT OF PATIENT QUALITY OF LIFE (QoL), FUNCTION, and PSYCHOSOCIAL SUPPORT
Fatigue, cognitive dysfunction, and pain, are the primary reasons (88, 169) for the often-profound reduction in QoL experienced by a large majority of Sjogren’s patients (240). Neurological manifestations, particularly small fiber neuropathy and dysautonomia, significantly impact QoL but are often overlooked due to inadequate clinician training.
Psychosocial support is crucial for people with Sjogren’s, not because the disease has a psychological basis, but because of the significant challenges associated with living with a chronic, often debilitating illness. A major cause of patient distress is being unable to find clinicians who are knowledgeable about Sjogren's.
COPING, COMMUNICATION, & GASLIGHTING provides resources and practical tips and strategies for improving your overall relationship with yourself and others. More detailed information and self-advocacy tools for monitoring the systemic manifestations of Sjogren’s will be provided in the blog series, ONGOING CARE to be published this year.
ONGOING CARE Blog Series
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ONGOING CARE 1: What Care Do I Need?
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The Ongoing Care blog series will not be possible without the invaluable contributions of Bexi, who provides essential science communication, editing, and design support.
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Updated 02-09-2025