Sjögren's Syndrome Patient Information Sheet
Sjögren's syndrome is an autoimmune disorder that primarily affects the moisture-producing glands, causing dry eyes and dry mouth, but can also affect multiple organ systems throughout the body requiring regular monitoring and multidisciplinary care. 1
What is Sjögren's Syndrome?
- An autoimmune disease where your immune system attacks your body's moisture-producing glands
- Primarily affects salivary and tear glands, causing dry mouth and dry eyes
- Can affect other parts of the body including lungs, kidneys, joints, and nervous system
- More common in women (female-to-male ratio of 20:1)
- Usually diagnosed in middle age, but can occur at any age
Common Symptoms
Dry Eyes
- Burning, itching, or gritty feeling
- Sensation of foreign body in the eye
- Light sensitivity
- Blurry vision
- Need for frequent use of eye drops 2, 1
Dry Mouth
- Difficulty swallowing dry foods without liquids
- Frequent need to sip water
- Burning sensation in the mouth
- Dental problems (cavities, especially at gumline)
- Cracked, chipped teeth
- Gum inflammation
- Mouth sores 2, 1
Other Common Symptoms
- Swollen salivary glands (particularly parotid glands)
- Dry skin, vaginal dryness
- Persistent fatigue
- Joint and muscle pain
- Raynaud's phenomenon (fingers turning pale/blue in cold)
- Numbness or tingling in extremities 2, 1
Possible Complications
- Dental decay and oral infections
- Eye damage and vision problems
- Lung problems (interstitial lung disease, bronchiolitis)
- Kidney problems
- Nerve problems (peripheral neuropathy)
- Increased risk of lymphoma (cancer of the lymph nodes) 2, 1, 3
Diagnosis
Diagnosis typically requires:
- Blood tests for autoantibodies (anti-SSA/Ro, anti-SSB/La)
- Eye tests (Schirmer test, ocular staining)
- Measurement of saliva production
- Sometimes, a minor salivary gland biopsy 1, 4
Treatment Options
For Dry Eyes
- Artificial tears (preservative-free recommended)
- Eye ointments for nighttime use
- Conserving tears (punctal plugs)
- Prescription eye drops (cyclosporine) for inflammation 2, 1
For Dry Mouth
- Frequent sips of water
- Sugar-free gum or lozenges
- Artificial saliva products
- Prescription medications to stimulate saliva (pilocarpine, cevimeline) 1, 5
For Systemic Symptoms
- Hydroxychloroquine for joint pain and fatigue
- Other medications for specific organ involvement
- Immunosuppressive treatments for severe cases 1
Self-Care Tips
- Stay hydrated by drinking water frequently
- Use a humidifier, especially at night
- Avoid smoking and limit alcohol consumption 2
- Practice good oral hygiene (brush, floss, regular dental visits)
- Use moisturizers for dry skin
- Get adequate rest and manage stress
Important Monitoring
- Regular eye exams (every 6-12 months)
- Regular dental check-ups (every 3-6 months)
- Pulmonary function tests if lung symptoms develop
- Blood tests to monitor disease activity 2, 1
When to Contact Your Healthcare Provider
- Worsening eye or mouth dryness not responding to usual treatments
- New or worsening joint pain, rash, or fatigue
- Persistent dry cough or shortness of breath
- Unexplained fever or swollen glands
- Severe abdominal pain or yellowing of skin
Your Healthcare Team
Sjögren's syndrome often requires care from multiple specialists:
- Rheumatologist (coordinates overall care)
- Ophthalmologist (for eye care)
- Dentist (for oral health)
- Pulmonologist (if lung involvement)
- Other specialists as needed 1, 6
Remember: While Sjögren's is a chronic condition, proper management can significantly improve your quality of life and prevent complications.