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It’s natural to have questions about the future after being diagnosed with Sjögren’s disease (previously called Sjögren’s syndrome). Most people living with Sjögren’s disease have a life expectancy similar to people without the condition. The mortality rate (risk of dying) for Sjögren’s disease is only slightly higher, and this difference is very small. Life expectancy can also vary based on several factors, such as other health conditions or complications.
Sjögren’s disease is an autoimmune condition. This means the immune system mistakenly attacks moisture-producing glands, leading to dry eyes and dry mouth (sometimes called sicca symptoms). When Sjögren’s disease develops on its own, it’s called primary Sjögren’s. When it develops alongside another autoimmune disease, like lupus or rheumatoid arthritis, it’s called associated Sjögren’s (previously called secondary Sjögren’s).
This article focuses on primary Sjögren’s disease. We’ll look at what research says about long-term outcomes and steps you can take to manage Sjögren’s and live well.
Although Sjögren’s disease is often known for causing dryness, it is a systemic disease, meaning it can affect the whole body. Research shows there is a small increase in health risks compared to the general population, but the long-term outlook is generally positive. Most people living with Sjögren’s disease have high survival rates many years after diagnosis. For example, some studies have reported 10-year survival rates of around 94 percent.
Sjögren’s disease itself is rarely the direct cause of life-threatening events. About 14 percent of deaths among people with Sjögren’s are directly attributed to the condition, while nearly 60 percent are related to common health problems, such as infections and cardiovascular (heart and blood vessel) disease.
Having Sjögren’s disease may increase your risk for these issues, but it does not mean you’ll definitely experience them. Taking care of your overall health and working with your healthcare team to watch for risks early can help you have the best possible outcome.
Most people living with Sjögren’s disease maintain good overall health, but certain issues may require extra attention. Knowing which areas could be affected, and how your healthcare team keeps track of them, can help you stay proactive with early detection and management.
Cardiovascular health is important for everyone, but it’s especially a priority for people living with Sjögren’s disease.
Heart disease is one of the main causes of death in people with Sjögren’s disease. Research shows that people with Sjögren’s disease have a 30 percent to 60 percent higher risk of heart problems than people in the general population. This increased risk is often linked to chronic (ongoing) inflammation, which can cause atherosclerosis, a condition where the arteries become stiff and narrow.
Getting regular checkups and working with your healthcare team to manage inflammation can help protect your heart and blood vessels.
Studies show that reported rates of lung involvement in Sjögren’s disease range widely — from about 9 percent to 75 percent — depending on how lung involvement is defined and detected. Most people with lung involvement experience only mild symptoms, such as a dry cough or more frequent respiratory infections. However, a more serious concern is interstitial lung disease (ILD), a condition where ongoing inflammation leads to fibrosis (scarring) of the lung tissue over time.
For people who develop ILD, outcomes can vary widely depending on how severe the disease is, how early it’s detected, and how well it responds to treatment. Research suggests that reported mortality rates from ILD in people with Sjögren’s disease range from about 7 percent to 39 percent over follow-up periods of several years. This makes regular lung checkups, such as pulmonary function tests, important for early detection and intervention.
People living with Sjögren’s disease have a higher risk of developing lymphoma (a type of blood cancer) than the general population. However, only about 5 percent to 10 percent of people with Sjögren’s disease will develop lymphoma during their lifetime. Around 60 percent of these cases are mucosa-associated lymphoid tissue (MALT) lymphoma, which tends to grow slowly and usually has a favorable outlook.
About 10 percent of lymphomas in people with Sjögren’s disease may become more aggressive over time. Regular checkups and routine monitoring can help your healthcare team catch changes early and provide the most effective treatment.
Infections are a major health concern for people living with Sjögren’s disease. The risk of infection can be higher because of changes in the immune system, chronic dryness in the airways (which reduces natural defenses), and certain immunosuppressive treatments like corticosteroids.
The good news is that many infections can be prevented. Taking proactive steps can help you manage these risks and support a full, active life:
Vasculitis (inflammation of blood vessels) is a serious complication that can affect some people living with Sjögren’s. The most common sign is palpable purpura, raised reddish-purple spots on your lower legs that don’t blanch (lighten in color) when pressed.
Vasculitis needs close monitoring because, if left untreated, it can damage organs such as the kidneys and may also signal a higher risk of developing lymphoma. Regular physical exams and blood tests can help your healthcare team detect and manage this complication early.
Approximately 5 percent of people with Sjögren’s develop kidney problems. The most common kidney issue is chronic tubulointerstitial nephritis, which means long-term inflammation in the spaces between the kidney’s tiny tubes. This can cause kidney stones or muscle weakness due to low potassium levels.
A more serious type of kidney problem is glomerular disease, which involves inflammation of the kidney’s filtering units (called glomeruli). Glomerular disease often occurs along with vasculitis.
Up to 20 percent of people living with Sjögren’s disease may develop neurological (nerve-related) problems. The most common is small fiber neuropathy, which can cause tingling, numbness, or burning sensations in the hands and feet. Less commonly, Sjögren’s disease can affect the brain and spinal cord.
Regular monitoring of nervous system health is important because more severe nerve involvement can impact long-term quality of life and outcomes.
To help determine the best treatment plan, your healthcare team may use the ESSDAI score, short for EULAR Sjögren’s Syndrome Disease Activity Index. This tool measures how active Sjögren’s disease is throughout the body, including how much it is affecting organs beyond the eyes and mouth. A score of 14 or higher means high disease activity and a greater risk for future health problems. Checking your ESSDAI score at diagnosis helps your healthcare team create a personalized plan for monitoring your health.
Doctors also check certain blood markers, such as cryoglobulins (abnormal proteins found in about 7 percent of people at diagnosis), which are linked to an increased risk of serious complications. Cryoglobulins often appear with vasculitis.
Other important markers include anti-Sjögren’s-syndrome-related antigen B (anti-SSB) antibodies and hypocomplementemia (low complement levels), which means some immune system proteins are lower than normal. These indicators help your healthcare team predict and manage complications more effectively.
Certain factors, such as being older at diagnosis or being male, are linked to a higher risk of some systemic issues, according to research in Rheumatology. Your healthcare team uses this information to personalize your treatment and help you stay as healthy as possible.
Living well with Sjögren’s means actively managing your health. While many people with Sjögren’s have a life expectancy similar to the general population, long-term wellness depends on consistent monitoring and early intervention.
At diagnosis, tools like the ESSDAI score and cryoglobulin testing help your healthcare team to personalize your care plan immediately. Regular pulmonary function tests catch lung changes early, while cardiovascular and cancer screenings identify systemic issues when most manageable. This integrated approach ensures complications are caught early when they respond best to treatment.
Regular physical activity is one of the most effective ways to help manage the profound fatigue many people experience. It helps improve both energy levels and overall quality of life. Even moderate exercise, like a daily 20-minute walk, makes a measurable difference.
Protecting your oral health is also critical. Use fluoride toothpaste, schedule dental cleanings every three to six months, and avoid things that dry out your mouth like smoking, excessive caffeine, and alcohol. These can directly impact your long-term outcomes and quality of life.
Effective treatment plans involve a coordinated team — your rheumatologist, ophthalmologist, dentist, and primary care provider working together to monitor different aspects of your health. This interprofessional approach ensures nothing falls through the cracks and allows specialists to share insights that improve your overall care.
When complications arise, treatments range from immunosuppressive medications to targeted biological therapies for severe cases. Early, aggressive treatment can stabilize disease activity and significantly improve long-term outcomes. As science advances toward tailored therapies, there is genuine hope for better, more targeted relief in the coming years.
Early intervention for warning signs can prevent serious complications. Contact your doctor immediately if you develop:
Schedule your next follow-up appointment if you haven’t already. Keep a symptom log noting any new or worsening issues, even if they seem minor. Consider adding a short walk or gentle exercise to your daily routine, even if it’s just 10 minutes to start.
With a proactive approach to care and a strong partnership with your healthcare team, you can navigate Sjögren’s successfully and maintain your quality of life for years to come.
On MySjögrensTeam, people share their experiences with Sjögren’s disease, get advice, and find support from others who understand.
What strategies have you found helpful for managing daily life with Sjögren’s? Let others know in the comments below.
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