Sjögren's syndrome: symptoms, tests and treatment

NHS inform explains that in an autoimmune condition the immune system attacks the body's own healthy tissue. In Sjögren's the main targets are the exocrine glands: the tear, saliva and vaginal glands. The antibodies damage these glands so they no longer work normally, and there is some evidence nerves controlling them are also affected.

It is classed as primary when it develops on its own, and secondary when it occurs with another autoimmune condition such as rheumatoid arthritis or lupus.

The NHS notes that more women than men are affected, and that the condition varies widely, from mild symptoms to problems that interfere with daily life.

Dry eyes and a dry mouth are the commonest symptoms. NHS inform describes burning, stinging, itchy or gritty eyes, swollen eyelids, light sensitivity and mucus discharge. A dry mouth can bring difficulty swallowing and chewing, a hoarse voice, swollen salivary glands, repeated oral thrush, tooth decay and gum disease.

The NHS also lists dry itchy skin, a persistent cough, an unpleasant taste from acid reflux and vaginal dryness. Muscle and joint pain and extreme tiredness are common, and NHS inform mentions difficulty concentrating and remembering.

The British Society for Rheumatology guideline says that although dryness of the eyes and mouth is classically described, dryness of other surfaces and body-wide (systemic) features, including fatigue and joint pain, are common. It says systemic features affect at least 70% of people and can include inflammatory arthritis, skin involvement, blood abnormalities, nerve problems and lung disease. It also reports that anxiety, depression, pain and fatigue are all increased compared with healthy people.

Symptoms come and go. The NHS says there are flare-ups and quieter periods, and that overdoing it without enough rest may trigger worse symptoms.

The NHS advises seeing a GP if you have symptoms of Sjögren's syndrome and they are affecting your daily life. NHS inform notes that dry eyes and mouth are common with age and that most people with them do not have Sjögren's, so the GP checks for the more common causes first and may refer you to specialists. NHS inform adds that untreated low tear production can permanently damage eyesight.

Dry eyes and mouth are common with age, and NHS inform notes that most people with them do not have Sjögren's. Symptoms overlap with other conditions, and people may see a dentist, an optician and a gynaecologist separately, which can delay a clear picture. The NHS says a GP will check for the more common causes first and may refer you on.

NHS inform describes a set of screening questions, such as daily troublesome dry eyes for more than three months, a gritty sensation, needing tear substitutes more than three times a day, daily dry mouth for over three months, swollen salivary glands and frequent drinking to help swallow food.

The NHS says there is no cure but treatment depends on which symptoms bother you most. Doctors can prescribe medicines to keep eyes and mouth wet, help glands make more tears and saliva, ease pain and swelling if a salivary gland is infected, ease joint and muscle pain, and sometimes dampen the immune attack to reduce pain and tiredness. A short course of steroid tablets may be used for severe joint pain.

Pharmacists can supply eye drops, moisturising skin cream, mouth gel and mouthwash. NHS inform says artificial tears and saliva usually help dry eyes and mouth, and that in severe cases medication or surgery may be recommended.

Fatigue and joint symptoms are often handled by a rheumatology team, who also review for other immune conditions.

NHS inform stresses eye and mouth hygiene because infection risk is higher, and care can prevent corneal ulcers and tooth decay. The NHS suggests drinking plenty of water, brushing teeth 2 or 3 times a day with fluoride toothpaste, chewing sugar-free gum and having dental check-ups every 6 months.

For eyes it suggests sunglasses with enclosed sides, regular eye checks and limiting long periods on screens. A humidifier or plants at home can raise the moisture in the air. It advises against smoking, smoky or dusty places, air-conditioned rooms, drying soaps, perfumed products near the vagina and acidic or sugary food and drink.

Omega-3 rich foods such as oily fish and walnuts are mentioned as part of a balanced diet.

The NHS says people with Sjögren's are more likely to have eye problems such as sores or blepharitis, other immune conditions such as rheumatoid arthritis, digestive conditions like irritable bowel syndrome, peripheral neuropathy, depression and, rarely, non-Hodgkin lymphoma. NHS inform adds that untreated low tear production can permanently damage eyesight.

Pregnancy needs planning. The NHS says the chance of some complications is higher, including miscarriage, and to speak to your care team early. NHS inform says women with the condition have an increased chance of babies with a temporary lupus-type rash or heart rhythm problems, so pregnancies are closely monitored.

The NHS route starts with a GP, then rheumatology, ophthalmology and dental services as needed. Diagnosis can take time because several tests are involved.

Private rheumatology or eye clinics can speed up tests such as Schirmer testing or antibody blood work. Long-term review for fatigue, joint pain and lymph gland changes is still best coordinated by one specialist team.