Sjögren's syndrome

The immune system attacking the glands that make tears and saliva. Dismissed as dryness, and it is a systemic disease.

What it is

Sjögren's syndrome affects an estimated half a million people in the UK, around nine in ten of them women. The average time to diagnosis is several years.

The immune system attacks the glands producing tears and saliva. So the headline symptoms are dry eyes and a dry mouth, which sounds minor and is treated accordingly.

It is not minor. It causes profound fatigue, joint pain, and it can affect the kidneys, lungs, nerves and blood vessels. It also carries a substantially raised risk of lymphoma, which is why persistent gland swelling needs investigating.

And the dry mouth is not a comfort issue. Saliva protects teeth, and people with Sjögren's lose teeth rapidly without intensive dental prevention. See xerostomia.

Signs you might notice

Dry, gritty eyes, and a dry mouth making speaking and eating dry food difficult.

Difficulty swallowing dry food without a drink, which is a useful specific question.

Rapid tooth decay, and recurrent oral thrush.

Swollen glands in front of the ears.

Profound fatigue, joint pain and Raynaud's.

Vaginal dryness, dry skin, and a persistent dry cough.

Persistent or asymmetric gland swelling needs prompt assessment for lymphoma.

How it can affect day-to-day life

Fatigue is rated by patients as the worst symptom, and it is the one least addressed in clinics focused on dryness.

Dental cost is significant and largely borne privately. High-fluoride toothpaste, frequent check-ups and saliva substitutes are essential rather than optional.

The invisibility is familiar from other conditions here: people look well, the tests may be equivocal, and the symptoms fluctuate.

Hydroxychloroquine helps fatigue and joint pain for many people and is under-prescribed.

Supporting someone well

Protect the teeth aggressively: high-fluoride toothpaste, brush twice daily and do not rinse, frequent dental review, and saliva substitutes. This prevents losses that cannot be reversed.

Use preservative-free eye drops frequently and ointment at night. See dry eye for lid care, which most people are never taught.

Sip water constantly and use sugar-free gum to stimulate what saliva remains.

Ask about hydroxychloroquine for fatigue and joint pain.

Report any persistent gland swelling promptly.

Ask for monitoring of kidney and lung function, since systemic involvement is easily missed.

Take the fatigue seriously and pace accordingly.

Where to get help

A GP can test for antibodies and refer to rheumatology.

The British Sjögren's Syndrome Association run a helpline and produce material for dentists.

Persistent gland swelling, breathlessness, or new numbness needs prompt specialist assessment.