Sjögren’s Disease

Frequently Asked Questions

This document has been developed by ASCIA, the peak professional body of clinical immunology/allergy specialists in Australia and New Zealand. ASCIA information is based on published literature and expert review, is not influenced by commercial organisations and is not intended to replace medical advice.

For patient/carer support organisations go to www.allergy.org.au/patients/patient-support-organisations.

ASCIA PC Sjögrens Disease FAQ 2024141.13 KB

Q 1: What is Sjögren’s disease?

Sjögren’s disease (SjD), also called Sjögren’s syndrome, is a systemic autoimmune condition with symptoms that include dryness of the eyes and mouth, fatigue (tiredness) and pain. It may occur by itself (primary SjD) or with other autoimmune conditions, such as systemic lupus erythematosus (SLE), systemic sclerosis and rheumatoid arthritis.

In SjD, the immune cells (white blood cells) enter glands and produce substances that cause tissue damage. The exact causes of SjD are not yet known, but doctors and scientists believe that some viruses and genetic factors can make people more likely to have SjD.

Q 2: Who is affected by SjD?

Middle-aged females are around nine times more likely to have SjD than males. Less often, the onset of SjD occurs in older adults and in children. SjD affects people of all ethnic backgrounds, but is more common in people with non-European backgrounds.

Q 3: What are the signs and symptoms of SjD?

Most people with SjD (around 90%) have dryness (sicca) symptoms, of the eyes and mouth. Sometimes other parts of the body can be affected, including the skin, nasal passages and external female genitals (vulval region). These symptoms can affect quality of life and make basic functions more difficult, such as eating, speaking and intimacy.

Fatigue and joint pains are also common in people with SjD. Other complications may appear such as salivary gland swelling, lung syndrome, nerve damage (neuropathy) and inflamed blood vessels (vasculitis).

Q 4: How is SjD diagnosed?

There are many other causes of dryness that should also be considered, such as dehydration, anxiety, smoking, medications, diabetes, increased age and previous radiotherapy to the head and neck region. Dry eyes and mouth are common symptoms, and are mostly not due to SjD.

Diagnosis of SjD and/or related conditions requires a detailed clinical history and examination by a doctor (clinical immunologist or rheumatologist).

A blood test will usually be performed to measure key markers, such as antinuclear antibody (ANA), anti-Ro60and anti-La. These tests are raised or positive in SjD but are not diagnostic by themselves.

The dryness of eyes may be measured by special filter paper (Schirmer’s test) and image your salivary glands. A salivary gland (lip) biopsy may be offered to confirm the diagnosis.

Q 5: How can SjD be managed?

There are currently no cures for SjD, but there are ways (strategies) to help manage SjD and prevent complications:

Manage dry eyes with regular use of preservative-free eye drops and ointments.
Sip water to keep a moist mouth and consider artificial saliva substitutes.
Use regular moisturising cream on the skin.
Brush teeth at least twice a day with a fluoride toothpaste, and visit a dentist regularly.
Avoid sugary and acidic foods.
Avoid smoking which can worsen dry mouths.
Engage in regular exercise which can also help symptoms of tiredness.
Have regular follow-ups with your doctor to ensure symptoms are adequately controlled and there are no “silent” complications developing.

Q 6: What other therapies are available for SjD?

If dryness symptoms become worse despite using the strategies listed above:

Your doctor may prescribe medications to help increase saliva and tear production.
An eye doctor or practitioner (ophthalmologist or optometrist) may also prescribe strong eye drops to reduce eye dryness and inflammation.

Pain may initially be managed with paracetamol and non-steroid anti-inflammatory drugs (NSAIDs). Hydroxychloroquine may also be considered.

For symptoms that are refractory (resistant to management) and/or severe, immunosuppression with medications such as prednisolone, methotrexate and rituximab may be used.

Your treating doctor should discuss each therapy with you.

There are clinical studies that are trialling newer therapies, to improve symptoms and quality of life for people with SjD.

Content developed August 2024

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