HOW TO MONITOR SJOGREN'S
Key Concepts
This page describes how to monitor systemic (non-dryness) Sjogren's manifestations and introduces the ONGOING CARE blog series.
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Ongoing monitoring is a crucial component of comprehensive Sjogren's care. To date, there are no official guidelines for monitoring the disease.
Monitoring Sjogren's is important because many manifestations of Sjogren's are largely invisible until they become disabling, debilitating, or, worse, fatal.
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​​Monitoring Sjogren's is more than just lab tests.
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To get the most out of this page, please review Tips for Reading Sjogren’s Advocate before reading further.
Introduction​
Sjogren's stands alone among common rheumatologic diseases in that many rheumatologists remain unfamiliar with the current understanding of the disease. See WHAT IS SJOGREN'S? to learn more about what Sjogren's is and what it is not.
Comprehensive Sjogren’s care addresses systemic manifestations, comorbidities, sicca, and other factors impacting your health and wellbeing. How Sjogren's manifests in patients varies widely, therefore, Sjogren's care must be individualized based on the unique needs, risk profile, and overall health status of each patient. ​
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​Regular monitoring is an essential component of comprehensive care for Sjogren's. Because Sjogren’s medical education is inadequate and there are no official guidelines for monitoring Sjogren’s, many patients must advocate for the care they need. This page and the entire Ongoing Care Series linked at the end of the page are designed to help you talk to your doctors about comprehensive care and monitoring for the full range of problems caused by Sjogren’s disease. What Care do I Need? explains the purpose of the Ongoing Care Series in detail.
Comprehensive Sjogren's Care Includes Monitoring
Monitoring Sjogren's disease is important because
many manifestations of Sjogren's are largely invisible
until they become disabling, debilitating, or, worse, fatal.
The reality is that Sjogren's is a serious, complex, and unpredictable disease that can cause significant damage anywhere in the body without readily apparent symptoms. Nearly every Sjogren’s patient, including those who are SSA-negative, has, or will develop, one or more systemic (non-sicca) manifestations during the course of their disease (38, 266, 267). 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.
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​Clinicians continue to overlook the systemic manifestations of Sjogren's disease and focus only on sicca because they are still being taught the myth that Sjogren’s is primarily a mild, sicca (dryness) syndrome. Clinicians who practice based on the myth that Sjogren’s is primarily a sicca disease are unlikely to provide comprehensive care for the systemic manifestations of Sjogren’s. (To learn more about why clinician's don't take Sjogren's seriously, read If Sjogren’s is a Serious Disease, Why Don’t Doctors Take it Seriously?, Myth-busting For Rheumatologists and, 'My own diagnosis was delayed’: Sjögren’s myths overshadow multi-system manifestations.)​​​
Sjogren’s Advocate is for educational purposes only.
It is not medical advice.
It should not be used as an official guideline.
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On other pages and in future posts, I will explain my sources, research methods, and analysis in detail.
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See the DISCLAIMERS page for more information.
What Is Monitoring?
​​Monitoring is the ongoing process of observing, measuring, and tracking your health over time to:
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assess your individual disease burden,
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identify any new or worsening problems,
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guide appropriate management for your unique needs,
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evaluate how well your treatments are working, and
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check for and manage medication side effects.
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Monitoring often falls short because most doctors have not been taught the following:
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There is no sicca-only version of Sjogren's disease.
SJOGREN'S IS MORE THAN "JUST SICCA" and not every person with Sjogren’s has sicca (3, 164, 232). Sjogren's is a whole-body disease. Monitoring and managing sicca is just one part of Sjogren's care.
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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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SSA and SSB titers 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.
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Every Sjogren’s patient, regardless of symptoms or antibody status (e.g., SSA,SSB) should be routinely monitored for a wide range of systemic manifestations.
There are no shortcuts. It's a myth that SSA-negative patients have a mild version of the disease and don't need to be followed. There is no “dipstick test” for Sjogren’s that determines overall disease activity or severity (how sick you are) (214, p.180). Each organ and system must be monitored and assessed separately to determine health status and guide management.
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In addition to being monitored for systemic manifestations, every patient should be monitored for COMORBIDITIES, which can have a major impact on overall disease burden, quality of life, and mortality.
Why monitor for the systemic manifestations of Sjogren’s?
Regular monitoring is crucial for assessing an individual patient's disease burden over time. New systemic manifestations can emerge at any time, and others may improve or worsen, necessitating ongoing monitoring (271). Monitoring frequency and tests beyond the basics will vary based on how Sjogren's presents in the individual patient.
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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, or get misattributed to fibromyalgia or anxiety. When patients don't feel new or changing symptoms it can lead to a false sense of stability, even though significant internal damage is occurring.
Regular monitoring guides treatment. Because no two Sjogren's patients are exactly alike, the only way for your doctor to truly understand how Sjogren's is impacting you is to routinely monitor you for a wide range of systemic manifestations. Monitoring helps your doctor determine if you need specific treatments, further tests, or referrals to specialists.
Early detection of the systemic manifestations of Sjogren’s through monitoring allows for timely intervention when treatments are most likely to be effective. Timely treatment offers the best chance to slow the disease's progression and improve long-term outcomes, including quality of life.​
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Monitoring Sjogren’s disease is more than just lab tests.
Monitoring for the systemic manifestations of Sjogren's disease includes the following components:
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. Assessment 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, are major contributors to fatigue and pain, but tend to be overlooked due to inadequate clinician training.
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Monitoring a patient's health should go beyond physical signs and symptoms.
It's crucial to ask, "How is the patient really doing?" This includes understanding the mental, social, and emotional aspects of their well-being.
A patient's top concern may be:
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Financial stress due to the illness.
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Difficulty getting the right care.
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Loss of their career, hobbies, or relationships.
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Losing their ability to care for their children.
A comprehensive approach to care must address these core issues, as they often have the greatest impact on a patient's quality of life.
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.
Note: The examples given here are not comprehensive. They are for the purpose of illustration.
ONGOING CARE Blog Series
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ONGOING CARE - PART 1: What Care Do I Need?
ONGOING CARE - PART 2: Sjogren's Care Varies Over Time.
ONGOING CARE - PART 3: If Sjogren's Is A Serious Disease, Why Don't Doctors Take It Seriously?​
ONGOING CARE - PART 4: The 7 Components of Sjogren's Care
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Updated 09-25-2025