Living with Sjögren’s Syndrome: A Guide to Diagnosis, Treatment, and Long-Term Management

If you are reading this, you know that Sjögren’s Syndrome is an autoimmune condition where your immune system attacks the glands that produce moisture: your tear and salivary glands. This condition can cause dry eyes and mouth, but it can also affect other parts of your body. As with all other rheumatology and autoimmune conditions, it can be difficult to diagnose if you don’t have the right provider. The information below is meant to guide you with more information to have a comprehensive conversation with your doctor, or find a doctor who can help diagnose and treat your condition and overall health.

What Are Early Symptoms That Could Be Sjogrens?

Catching Sjögren’s early can make a big difference in managing it effectively. If you notice these symptoms, it’s worth discussing them with your doctor to get a proper evaluation3. Here are some early signs to look out for:

  • Persistent dry eyes and mouth
  • Swelling of the salivary glands
  • Joint pain or swelling
  • Skin rashes or dry skin
  • Persistent cough
  • Vaginal dryness in women

Does Sjögren’s Syndrome Progress Over Time? 

Yes, Sjögren’s can progress if not treated. It typically presents in mild, moderate, or severe forms. Here’s what each stage looks like:

  • Mild Sjögren’s: Symptoms like dry eyes and mouth are present, but manageable with lifestyle changes and over-the-counter products.
  • Moderate Sjögren’s: Symptoms are more persistent and may require prescription medications. There might be joint pain and fatigue.
  • Severe Sjögren’s: The condition affects multiple organs and requires comprehensive treatment. Patients might experience significant dryness, severe fatigue, joint pain, and complications such as in the lungs or kidneys1.

How is Sjögren’s Syndrome Diagnosed? 

The journey to diagnosing Sjögren’s Syndrome involves several steps. Your doctor will look at your symptoms, medical history, and perform some tests. Here’s what you can expect:

  1. Physical Examination: Your doctor will check your eyes and mouth for dryness.
  2. Symptom Review: You’ll discuss how dry your eyes, mouth, nose, throat, and skin feel.
  3. Blood Tests: These tests look for specific antibodies like anti-SSA (Ro) and anti-SSB (La) that indicate Sjögren’s2.
  4. Saliva and Tear Production Tests: Techniques like the Schirmer’s test measure how much tears your eyes produce.
  5. Imaging Studies: Tests like ultrasounds of your salivary glands show their structure and function2.

Even if you don’t test positive for these antibodies, you can still have Sjögren’s. It’s all about the bigger picture. So if your lab results come back negative, but you still have all the symptoms of Sjögren’s, this is called Seronegative Sjögren’s. Your diagnosis will depend on your symptoms, physical exams, and other tests. It’s important to keep working with your doctor, or find a doctor who can provide a second opinion, to get a full understanding of your health3.

Does Sjögren’s Look Similar to Other Conditions? 

Several conditions can mimic Sjögren’s, making it tricky to diagnose. Here are a few:

  • Systemic Lupus Erythematosus (SLE): Causes joint pain, fatigue, and dry eyes/mouth.
  • Rheumatoid Arthritis (RA): Affects joints and can cause dryness.
  • Multiple Sclerosis (MS): Causes fatigue and muscle weakness.
  • Thyroid Disorders: Conditions like hypothyroidism can cause similar symptoms.
  • Chronic Fatigue Syndrome (CFS): Features persistent fatigue and joint/muscle pain.
  • Medication-induced Dryness: Some medications can cause dry eyes and mouth.

Getting the right diagnosis means you can start the right treatment and feel better sooner1.

Now That I’ve Been Diagnosed, What Are My Treatment Options? Finding What Works for You. 

Managing Sjögren’s Syndrome involves treating the symptoms and the underlying autoimmune response. Here’s a look at some treatment options:

  • Artificial Tears and Eye Drops: These help with dry eyes2.
  • Saliva Substitutes: These can ease dry mouth symptoms.
  • NSAIDs: Non-steroidal anti-inflammatory drugs such as ibuprofen help with inflammation and pain.
  • Hydroxychloroquine: This drug is used for joint pain and fatigue1.
  • Pilocarpine and Cevimeline: These stimulate saliva production3.
  • Topical Corticosteroids: Used for localized inflammation.

Your doctor will help you find the right medications and dosages. Keep a symptom log to see how these treatments impact your symptom, and whether they create new symptoms or side effects.

What Lifestyle Changes Can Be Part of My Treatment Plan? 

Making a few changes to your daily routine can make a big difference. Here’s how:

  • Stay Hydrated: Drink plenty of water to combat dryness.
  • Use Humidifiers: They add moisture to the air and help with dryness in your eyes, mouth, and throat.
  • Good Oral Hygiene: Use a soft toothbrush and fluoride toothpaste. Regular dental check-ups are crucial.
  • Eye Care: Use artificial tears and protect your eyes from irritants2.
  • Protect Your Joints: Gentle exercises can improve joint mobility. Avoid activities that stress your joints.
  • Manage Stress: Stress can worsen symptoms. Try relaxation techniques like deep breathing or meditation.
  • Balanced Diet: Eat foods rich in nutrients and omega-3 fatty acids. Avoid spicy or acidic foods that can irritate your mouth.

Which Supplements Will Help the Most? 

While there’s no cure for Sjögren’s, certain supplements can help. Always talk to your doctor before starting any new supplement. Here are a few that might help:

  • Omega-3 Fatty Acids: These have anti-inflammatory properties4.
  • Vitamin D: Supports bone health and immune function2.
  • B-Complex Vitamins: Helps with nerve function and energy levels.
  • Vitamin C: An antioxidant that boosts your immune system.
  • Probiotics: Promote a healthy gut microbiome.
  • Coenzyme Q10: Helps with cell energy production.

What Is My Potential Impact to My Daily Life? 

Living with Sjögren’s can significantly affect daily activities, but every day is different. With the right treatment, you can have many more good days than hard ones. Here are some common challenges and tips to manage them:

  • Fatigue Management: Plan your day to include rest periods and prioritize activities to conserve energy.
  • Hydration on the Go: Carry a water bottle and use portable humidifiers or misters.
  • Oral Care: Keep sugar-free candies or lozenges handy to stimulate saliva production.
  • Joint Protection: Use ergonomic tools and avoid repetitive motions that strain your joints.
  • Skin Care: Use moisturizers regularly to combat dry skin and prevent irritation.

Understanding the ways your body responds to your condition, and how to best manage each day can truly help improve your quality of life3.

By understanding Sjögren’s Syndrome and making informed decisions about diagnosis, treatment, and lifestyle changes, you can manage your symptoms better, and improve your life. Rheumission is here to help, whether to answer questions you may have, or to see you for an initial diagnosis or second opinion.

To learn more about our Rheumission approach to care, please visit the Approach section of our site, or book a 15-minute intro call with one of our providers. The Rheumission Way helps you get back to being you, with more joy and less pain. We will listen to you and co-create a plan that works for where you are now, and where you want to be. We are always here for you.

About the Author

Dr. Micah Yu is an integrative rheumatologist who incorporates complementary medicine with traditional rheumatology. He is quadruple board-certified in Rheumatology, Internal Medicine, Integrative Medicine and Lifestyle Medicine. He obtained his MD from Chicago Medical School and holds a Masters in Healthcare Administration and Biomedical sciences. He completed his internal medicine residency and rheumatology fellowship at Loma Linda University in Southern California. He is a graduate of the Andrew Weil Integrative Medicine Fellowship at the University of Arizona. In addition, he is certified in functional medicine through the Institute of Functional Medicine. He has a very unique perspective on autoimmune disease and arthritis, as he is both a patient with arthritis and physician. Dr. Yu was diagnosed with gout at the age of 17 and later diagnosed with spondyloarthritis as well. He is able to understand his patient’s medical problems from a patient perspective. The foundation of his practice is to combine allopathic medicine with complementary medicine. He works with his patients to come up with a treatment plan that not only fights the disease, but also is aligned with his patient’s goals. In addition to Rheumission, Dr. Yu is on social media under @MYAutoimmuneMD educating about autoimmune diseases and integrative medicine.

Note: This information is for informational purposes only. No material on this site is intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition or treatment and before undertaking a new healthcare regimen, and never disregard professional medical advice or delay in seeking it because of something you have read on this website.

References

1. Shiboski, C. H., Shiboski, S. C., & Criswell, L. A. (2017). American College of Rheumatology classification criteria for Sjögren’s syndrome: A data-driven, expert consensus approach in the SICCA cohort. Arthritis Care & Research, 69(6), 948-956. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3349440/ 

2. Ramos-Casals, M., Brito-Zerón, P., & Kostov, B. (2020). EULAR recommendations for the management of Sjögren’s syndrome with topical and systemic therapies. Annals of the Rheumatic Diseases, 79(1), 3-18. https://pubmed.ncbi.nlm.nih.gov/31672775/ 

3. Vivino, F. B., Bunya, V. Y., & Massaro-Giordano, M. (2019). Sjögren's syndrome: An update on disease pathogenesis, clinical manifestations and treatment. Clinical Immunology, 203, 81-92. https://pubmed.ncbi.nlm.nih.gov/31022578/ 

4. Baer, A. N., & Walitt, B. (2017). Sjögren’s syndrome and other causes of sicca in older adults. Clinics in Geriatric Medicine, 33(1), 87-103. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5125547/