Promoting optimal care for Sjogren's, a common, serious, systemic disease.
Key Concepts
This page lists common myths about Sjogren’s countered with the current understanding of the topic using the best scientific evidence available.
For each myth, you will have resources such as quotes from scientific articles that you can print and take to your clinicians. This information will help you advocate for appropriate medical care.
See MYTHS ABOUT DIAGNOSIS for self-advocacy tools that you can use if you are having trouble getting diagnosed.
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To increase your chances of success, please read the SELF-ADVOCACY section: ABOUT SELF-ADVOCACY, KNOW YOUR RHEUMATOLOGIST, and HANDOUTS FOR CLINICIANS before reading this page.
As always, use the 3 P's of self-advocacy when myth-busting:
Prioritize individual myths.
Prepare materials to counter the myth.
Practice what you want to say to your clinician.
MYTHS ABOUT SJOGREN'S
Introduction
Despite being a common, serious, systemic disease, it can be challenging to find clinicians who are knowledgeable about Sjogren’s. Myths and misperceptions about Sjogren’s remain widespread, even among rheumatologists, the specialists who are responsible for taking the lead on Sjogren’s care. Patients often need to advocate for the diagnosis and management of Sjogren’s and all its manifestations, not just sicca (dryness).
You must be prepared to:
- share reliable information about Sjogren’s from academic sources,
- counter myths about Sjogren's that get in the way of proper diagnosis and care,
- respectfully explain why you are sharing the information and how you think it will help your care.
This page lists common myths about Sjogren’s, the current understanding of the topic using the best available scientific evidence, and tools to help you advocate for appropriate medical care.
If you are using this page for the first time, read through the table of contents so you know what is on this page. Rather than trying to read the entire page, try starting with one myth that interests you.
Other Myth-busting Resources
Use the following key resources with the information about each myth to successfully advocate for better medical care:
Smart Patients - This online community of Sjogren's patients is where you will be able to get tips and support from other patients who have faced similar situations.
KNOW YOUR RHEUMATOLOGIST - It is important to know your rheumatologist’s approach to Sjogren’s to effectively communicate with them.
HANDOUTS FOR CLINICIANS - Learn how to choose and share information about Sjogren’s with your clinician. Simply printing out or emailing them articles or handouts without preparation and explanation is rarely effective.
ABOUT SELF-ADVOCACY - Learn why self-advocacy is necessary and how to be effective at it. The 3 P’s of self-advocacy: Prioritize, Prepare, and Practice, are key to communicating effectively with your clinicians for better medical care.​
Table Of Contents
Myth 1: Sjogren’s is rare.
Reality: Sjogren’s is not rare, just rarely diagnosed.
Myth 2: Sjogren’s is mostly a disease of middle-aged women.
Reality: Sjogren’s can impact anyone at any age.
Myth 3: Sjogren’s has a low burden of illness; most patients are only mildly affected by it.
Reality: Sjogren’s has a high burden of illness; 79% of Sjogren’s patients say that the disease gets in the way of things they need to do each day.
Myth 4: Sjogren’s can’t kill you.
Reality: About 10% of people with Sjogren’s die directly from systemic Sjogren’s manifestations.
Myth 5: Sjogren’s is just sicca (dryness), primarily limited to dry eyes and mouth.
Reality: Sjogren’s is a systemic disease that can impact any area of the body. Sicca is usually, but not always, present.
Myth 6: Sicca (dryness) has the greatest impact on quality of life (QOL) in people with Sjogren’s.
Reality: Fatigue and pain, not sicca (dryness), are the primary cause of lower QOL for most people with Sjogren’s.
Myth 7: Fatigue, cognitive dysfunction (brain fog), and widespread pain are not caused by Sjogren’s.
Reality: Fatigue, cognitive dysfunction (brain fog), and widespread pain are caused directly by Sjogren’s.
Myth 8: Sjogren’s does not cause “X”.
Reality: Sjogren's can cause a wide range of systemic manifestations and not all clinicians may be familiar with them.
Myth 9: Sjogren’s is a mild form of lupus (SLE)
Reality: Sjogren’s is a distinct disease with unique characteristics; it is not lupus.
Myth 10: There are no systemic treatments for Sjogren’s.
Reality: Sjogren’s clinical practice guidelines provide treatment recommendations for the systemic aspects of Sjogren’s.
Myth 1: Sjogren’s is rare.
Reality: Sjogren’s is not rare, just rarely diagnosed.
In the United States, rare diseases are defined as those impacting less than 200,000 people.
Sjogren’s impacts an estimated 3-4 million people in the U.S, 20-40 times more than the cutoff for rare diseases (1). Moreover, this estimate is conservative because it does not include Sjogren’s that co-occurs with related diseases such as rheumatoid arthritis (RA) and/or systemic lupus erythematosus (SLE) (sometimes inaccurately called, "secondary Sjogren’s").
When a disease such as Sjogren’s is considered rare, clinicians are less likely to recognize it when they encounter it in a patient. Rather, they are more likely to misdiagnose their patient with a more familiar condition/disease such as fibromyalgia, irritable bowel syndrome, or health anxiety (hypochondria). Rare diseases get less research funding and little attention by medical education programs, reinforcing clinical neglect of the disease.
Read SJOGREN'S IS COMMON to learn why most people with Sjogren’s remain undiagnosed.
Self-Advocacy Tools
1. Print “Extraglandular ocular involvement and morbidity and mortality in primary Sjogren’s Syndrome” (156) and highlight these sentences in the final paragraph:
"Primary SS is estimated to affect 2 to 4 million Americans which is actually greater than the number of individuals with rheumatoid arthritis, and therefore might as well be the most common autoimmune disease. Unfortunately, primary SS still remains underdiagnosed and ocular findings are underappreciated despite the devastating consequences."
2. Print the review article "Sjogren Syndrome" and highlight the first sentence under “Epidemiology” in this article.
"Sjogren syndrome is far from a rare disorder with an incidence approaching approximately one-half of that of rheumatoid arthritis (RA) or affecting 0.5% to 1.0% of the population."
Note that 0.5-1% estimates the prevalence of Sjogren’s alone (“primary Sjogren’s”), which constitutes only about half of people with Sjogren’s.
Myth 2: Sjogren’s is mostly a disease of middle-aged women.
Reality: Sjogren’s can impact anyone at any age.
Although Sjogren’s is most often diagnosed in women between the ages of 40 and 60, the age of onset of Sjogren’s is not the same as the age of diagnosis. It can take many years, often decades (69, 240), for Sjogren’s to progress to the point where the disease is recognized (3). Younger people with Sjogren's are often overlooked by clinicians, leaving the disease to progress undiagnosed and untreated, often for decades. While women represent about 90% of Sjogren’s patients, men and children get Sjogren’s too.
Learn more about DELAYED AND MISSED DIAGNOSIS
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Self-Advocacy Tools
Print and share "Sjogren's: the patients' perspective" by Kathy Hammitt of the Sjogren’s Foundation (161). Highlight the following sentences from the first paragraph on the second page (S-26):
"We must start doing a better job of recognising Sjogren’s in younger patients and in men. When we focus on Sjogren’s as a disease of middle-aged and post-menopausal women and one that is marked primarily by dryness, we miss important sectors of our population that might have Sjogren’s. We miss the chance to treat patients earlier in the disease process and the ability to learn more about the disease overall, such as how the disease might start, how it progresses over time, and about symptoms and complications with earlier onset."
Myth 3: Sjogren’s has a low burden of illness; most patients are only mildly affected by it.
Reality: Sjogren’s has a high burden of illness; 79% of Sjogren’s patients say that the disease gets in the way of things they need to do each day (240).
Most people with Sjogren’s experience loss of function from severe fatigue and organ system damage. Quality of life for the average Sjogren's patient is lower than that of the average patient being treated for rheumatoid arthritis (RA) or systemic lupus erythematosus (SLE) (27, 44, 99). Many Sjogren’s patients must reduce work hours or stop working altogether (47, 240), usually because of fatigue or cognitive dysfunction (“brain fog”). Despite this, Sjogren's is routinely downplayed as being an unimportant, "benign" sicca (dryness) disease.
Self-Advocacy Tools
​1. Print and share, "Sjogren's: the patients' perspective" by Kathy Hammitt of the Sjogren’s Foundation (161). She writes a brilliant description of the devastating burden of the disease, and how it is often met with denial or disinterest. Be sure to highlight the sentences that you want to bring to your clinician’s attention.
You may want to highlight this sentence on the second page (S-26), “Sjogren’s is a disease that can affect any organ or bodily system and interferes with our ability to work, be the parent we wish we could be, socialize and carry out daily activities."
2. Print and share this news release from Horizon Therapeutics and highlight these quotes from Sjogren’s expert, Dr. Fredrick Vivino:
"'Sjogren’s is a devastating autoimmune disease with many unmet treatment needs,' said Frederick B. Vivino, M.D., M.S., former Director of the Penn Sjogren's Center and chief, division of rheumatology at Penn Presbyterian Medical Center, University of Pennsylvania Perelman School of Medicine. 'It significantly impacts patient quality of life and leads to numerous serious complications. In addition to arthritis and debilitating fatigue, the internal organs are frequently affected. Dry eyes and dry mouth are not trivial symptoms and, when ignored, can lead to life-changing complications including altered vision, corneal ulcers, accelerated caries and eventual loss of the dentition.'"
Please ignore the inaccurate prevalence data in a separate part of the article, which did not come from Dr. Vivino.
3. Print and share "Why Language Matters" from Sjogren's Quarterly. Highlight these sentences which start at the end of page 1:
"Accordingly, it has been shown in a study analyzing patients with rheumatoid arthritis, systemic sclerosis, lupus and Sjogren’s, that patients with Sjogren’s have the lowest levels in certain domains of quality of life (vitality, social function) and the second lowest levels after systemic sclerosis in all investigated quality of life scores. Moreover, patient-reported symptoms are stronger predictors of quality of life as compared to systemic manifestations in Sjogren’s, illustrating the high importance of these symptoms for all Sjogren’s patients including those with other systemic autoimmune diseases."
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Myth 4: Sjogren’s can’t kill you.
Reality: About 10% of people with Sjogren’s die directly from systemic Sjogren’s manifestations.
Early mortality has been documented in multiple studies using a tool called the standardized mortality ratio (SMR). "Sjogren’s is a serious disease with excess mortality (death), mainly related to the systemic involvement of the disease and the development of lymphomas in some patients." (42) Comorbidities, especially cardiovascular disease and severe infections, also contribute to premature mortality (42, 61).
Learn more about Sjogren's and MORTALITY.
Self-Advocacy Tools
Print and share "Systemic Sjogren’s: More than a Sicca Disease" (24). Highlight the first sentence under the heading "Systemic Sjogren’s May Be Life-Threatening", "Although severe, life-threatening systemic involvement has rarely been reported in pSS, it may account for nearly 10% of deaths.
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Myth 5: Sjogren’s is just sicca (dryness), primarily limited to dry eyes and mouth.
Reality: Sjogren’s is a systemic disease that can impact any area of the body (252). Sicca is usually, but not always, present.
Sjogren’s experts cite a wide range of prevalence estimates for systemic disease in Sjogren's. Most of these estimates are too low and incorrect. The correct number lies between 90 and 100%. There is no study that looks at the entire landscape of systemic disease manifestations in Sjogren’s patients. However, one large study followed nearly 1000 Spanish patients from diagnosis over 6 years and found that 70-80% had at least one non-sicca (systemic) feature at diagnosis and more than 90% had at least one systemic feature at 6 years (38). This study used the EULAR Sjogren’s Syndrome disease activity index (ESSDAI) to measure systemic disease which excludes many common systemic manifestations.
Not every Sjogren’s patient has sicca; about 1 in 5 (20%) first present with systemic manifestations and no obvious sicca. This is especially common in patients with neurological features such as small fiber neuropathy or dysautonomia (3, 202, 232) People with non-sicca presentations of Sjogren's usually experience long delays to diagnosis because of the incorrect belief that you must have sicca to have Sjogren’s (36, 61).
Every patient, regardless of antibody status or symptoms, should be checked for a wide variety of systemic manifestations. Systemic manifestations can be found in almost every patient who is carefully evaluated. Despite this, few patients receive comprehensive monitoring for systemic manifestations.
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Self-Advocacy Tools
​1. Because this myth is so harmful, the Sjogren’s Advocate team created a handout for clinicians, SJOGREN'S IS MORE THAN "JUST SICCA". Be sure to read the User Guide that goes with the hand out. Do not just print out the handout and expect your clinician to read it.
2. Print "Not all Sicca is Sjogren's and not all Sjogren's is Sicca" (232) and highlight the following sentences in the second paragraph of the Discussion section:
"Despite its classic association with dry eyes and dry mouth syndrome, approximately 20% of patients with SS do not have sicca symptoms. Most of these patients may not ever develop sicca symptoms as part of their disease manifestations but may have other features of systemic involvement across 12 different disease domains described in the EULAR Sjogren’s Syndrome Disease Activity Index (ESSDAI)."
3. Print: "Sjogren's Without Dryness? Yes, It's a thing"
Please note that this is more common than indicated by the paper because people with non-sicca presentations rarely get diagnosed.
COUNTERING MISINFORMATION - SJOGREN'S IS MOSTLY DRYNESS, NOT SYSTEMIC
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Myth 6: Sicca (dryness) has the greatest impact on quality of life (QOL) in people with Sjogren’s.
Reality: Fatigue and pain, not sicca (dryness), are the primary cause of lower QOL for most people with Sjogren’s (169, 250).
Many clinicians and researchers focus on sicca, assuming that it is the most important part of the disease. Sicca is important, but fatigue, both physical and cognitive, is the top reason for lower quality of life and loss of employment (42, 47, 94). Fatigue is often profound. Physical fatigue impacts 70-80% of Sjogren’s patients (26, 240). Pain can have many origins including musculoskeletal, gastrointestinal, neuropathic, and migraines or other severe headaches (41, 27, 206).
Self-Advocacy Tools
​1. Print and share, "Sjogren's: the patients' perspective" by Kathy Hammitt of the Sjogren’s Foundation (161). Highlight the sentences that you want your clinician to understand about your experience. Although pain is only mentioned briefly, every rheumatologist should read the description of fatigue on page 2 to understand its impact, "We cannot remain dismissive of so-called 'benign symptoms'…we are exhausted beyond what words can describe."
2. Print the Systemic Manifestations Clinical Practice Guidelines from the Sjogren's Foundation to show the various treatments recommended for musculoskeletal pain and fatigue.
3. Print "Pain and fatigue are predictors of quality of life in primary Sjogren’s syndrome" (169), which is about the impact of pain and fatigue on quality of life (QoL).
On page 7, highlight, "Although dryness is the main symptom and causes great discomfort in pSS patients, it was not a predictor of QoL, as demonstrated in previous studies [11, 35]."
On page 6, highlight the two paragraphs starting with, "In pSS, QoL has been found to be associated with fatigue, pain/articular involvement, ocular and oral involvement, pruritus, sexual dysfunction, impaired sleep, pulmonary manifestations, psychological dysfunction and impaired physical function [20]...Taken together, the results suggest that fatigue is itself associated with pSS but may not be explained by disease activity."
Note: Disease activity is measured by the ESSDAI, which is a research tool that, by it’s very function, excludes many important systemic manifestations.
4. Print "Ocular Manifestations and Burden Related To Sjogren’s Syndrome: Results of a Patient Survey" (187). Even though this paper is about the impact of eye (ocular) manifestations, Tables 4 and 5 show that fatigue is by far the biggest contributor to quality of life. The bigger the odds ratio (OR), the greater the impact. Circle or highlight the fatigue columns in Tables 4 and 5 to show to clinicians who downplay the impact of fatigue on quality of life.
5. Other helpful resources if your clinician downplays or psychologizes your symptoms:
All in Your Head?
Sjogren's symptoms can look like fibromyalgia
Sjogren's and Inflammation, Part I
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Myth 7: Fatigue, cognitive dysfunction (brain fog), and widespread pain are not caused by Sjogren’s.
Reality: Fatigue, cognitive dysfunction (brain fog), and widespread pain are caused directly by Sjogren’s.
Fibromyalgia and Functional Neurological Disorder (FND) are rarely appropriate labels for Sjogren's patients with fatigue, cognitive dysfunction, or widespread pain.
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Fatigue, cognitive dysfunction, and widespread pain are core systemic manifestations of Sjogren's with very real underlying physiological causes (152, 199, 204) and are prevalent regardless of anxiety and depression (27). Unfortunately, fatigue, cognitive dysfunction, and widespread pain are often dismissed as psychological problems, functional disorders, or simply part of sicca (dryness). But these core systemic manifestations of Sjogren’s are so pervasive and disabling that they should be considered hallmark features of the disease.
Neurological disorders are a major (but not the only) underlying cause of fatigue, cognitive dysfunction, and widespread pain, but, unfortunately, these disorders are rarely evaluated.
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Self-Advocacy Tools
This myth is too complex to address in adequate detail on this page. The following will help you get started:
1. SJOGREN'S SYMPTOMS CAN LOOK LIKE FIBROMYALGIA
2. AUTONOMIC DISORDERS and small fiber neuropathy are a major cause of reduced quality of life. It is important for patients to be properly diagnosed and treated for these conditions. You may need to ask repeatedly for an evaluation / referral.
3. If your clinician tells you that you have Functional Neurological Disorder (FND) please read ALL IN YOUR HEAD? for self-advocacy tools.
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Myth 8: Sjogren’s does not cause "X".
Reality: Sjogren's can cause a wide range of systemic manifestations and not all clinicians may be familiar with them.
"X" refers to any Sjogren’s manifestation that your clinician denies could be caused by Sjogren’s. Sjogren’s can impact any part of the body. You can look up your condition on Sjogren’s Advocate, the Sjogren’s Foundation, or other reliable resources to find out if Sjogren’s can cause it.
A clinician denying that your manifestation could be caused by Sjogren's can happen for any systemic manifestation but is especially problematic for the conditions listed under Self-Advocacy Tools below.
Self-Advocacy Tools
1. Use the search bar on Sjogren's Advocate to look for various manifestations, organs, or systems. This is a work in progress, but many of the manifestations that are the most under diagnosed have pages or blog posts that offer information and self-advocacy tips.
2. WHAT TO KNOW ABOUT SJOGREN’S LUNG DISEASE
4. GASTROINTESTINAL MANIFESTATIONS
5. NEUROLOGICAL COMPLICATIONS ARE OFTEN OVERLOOKED
7. NEUROPATHY including small fiber neuropathy
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Myth 9: Sjogren’s is a mild form of lupus (SLE).
Reality: Sjogren’s is a distinct disease with unique characteristics; it is not lupus.
Sjogren’s does not arise from lupus or turn into lupus, although the two may coexist and often have overlapping features. People with Sjogren’s often have immune comorbidities; lupus is one of them. Each of the autoimmune rheumatic diseases, including Sjogren’s, is a distinct disease with unique characteristics.
Self-Advocacy Tools
1. Read SJOGREN'S IS SJOGREN'S for resources and links.
2. Print "Equal rights in autoimmunity: is Sjogren's syndrome ever 'secondary'?" (144) (click the PDF button for a printable version). Under "Conclusion", highlight the bottom part of the first paragraph and the second paragraph:
"From a chronological perspective it seems that SjS might predate RA, SSc and SLE in a considerable proportion of patients, and does not always come 'second'. The consequence of the 'primary' and 'secondary' nomenclature has been that SjS associated with other autoimmune diseases has been under-recognized, under-researched and possibly under-treated, with the very real risk that such patients will be left-behind by current progress in drug development and consequently have their future therapeutic options curtailed."
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Myth 10: There are no systemic treatments for Sjogren’s.
Reality: Sjogren’s clinical practice guidelines provide treatment recommendations for the systemic aspects of Sjogren’s.
While there are currently no FDA-approved medications specifically for Sjogren’s, effective treatment options are available. It is customary practice to prescribe medications "off-label" for various conditions; clinicians should not hesitate to do so for Sjogren’s.
Self-Advocacy Tools
1. Print the Sjogren’s Foundation’s Clinical Practice Guideline, Systemic.
Highlight the areas of concern that you wish to discuss with your doctor. This guideline is especially helpful for musculoskeletal pain/ arthritis.
Other Sjogren’s Foundation clinical practice guidelines
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Pulmonary (lung) .
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Peripheral nervous system, expected to be published in 2024.
2. Print the European League Against Rheumatism (EULAR) recommendations for the management of Sjögren's syndrome with topical and systemic therapies (248).
Circle or highlight Figure 3 (pages 12 and 13) which summarizes treatment options for nine areas of systemic involvement. You can highlight a specific topic such as renal (kidney) disease, or simply use the article to show that systemic treatments are routinely used in Sjogren’s.
3. If your clinician tells you that hydroxychloroquine (HCQ) does not work for Sjogren’s, read HCQ II and HCQ III to find resources that you can use to advocate for treatment.
Updated 04-09-2024