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Sjögren’s syndrome

Published by Bupa's Health Information Team, July 2011.

This factsheet is for people who have Sjögren’s syndrome, or who would like information about it.

Sjögren’s syndrome (pronounced Shurgren's syndrome) is a disorder characterised by damage to the secretory glands (the glands that produce secretions such as tears and saliva). 

About Sjögren’s syndrome

Sjögren’s syndrome mainly affects your eyes and mouth causing them to become dry, but rarely it can affect other organs as well. This syndrome is an example of an autoimmune disease. This is a condition in which your immune system, which usually protects you against infections from bacteria and viruses, attacks healthy tissues and organs instead. These tissues become damaged and inflamed. In Sjögren’s syndrome, your immune system attacks the secretory glands, such as the tear glands in your eyes and the salivary glands in your mouth, reducing the amount of secretions they produce.

It is thought that there are at least half a million people with Sjögren’s syndrome in the UK. However, there could be many more, as many people don't seek medical help for their symptoms.

Sjögren’s syndrome is most common in women, with nine times as many women having the syndrome as men. It mostly affects women between the ages of 40 and 60 and rarely affects children.

Sjögren’s syndrome can occur on its own (primary Sjögren’s syndrome) or secondary to other autoimmune conditions such as rheumatoid arthritis or systemic lupus erythematosus (secondary Sjögren’s syndrome).

Symptoms of Sjögren’s syndrome

The symptoms of Sjögren’s syndrome are the same for both primary and secondary Sjögren’s syndrome.

The two main symptoms are:

  • dry eyes - your eyes may feel irritable, sore or ‘gritty’
  • dry mouth - this can make your voice sound hoarse, reduce your ability to taste and may make it difficult to swallow

These may be the only symptoms you get if you have Sjögren’s syndrome. However, the syndrome can sometimes cause additional symptoms such as:

  • swelling of the salivary glands on each side of your face
  • tiredness
  • aching and painful joints, sometimes with swelling and inflammation
  • vaginal dryness
  • dry skin
  • irritable bowel syndrome (IBS), which may include lower abdominal (tummy) pain
  • irregular bowel movements caused by reduced bowel secretions that mean the gastrointestinal tract is dry making it harder to swallow and digest food

Complications of Sjögren’s syndrome

Sjögren’s syndrome can sometimes be associated with more serious problems. These are rare but may include any of the following. 

  • One complication of having dry eyes is that the cornea (the clear, outer surface of your eye) can become infected or ulcerated. If left untreated, this could lead to a loss of vision.
  • Saliva is known to have an antibacterial action, so having less saliva in your mouth can lead to more frequent mouth infections and an increase in tooth decay.
  • Some people with Sjögren’s syndrome may have an increased risk of getting lymphoma, a cancer of the lymphatic system. This affects around one in 100 people with the syndrome.
  • The nerves in your arms and legs can become inflamed or damaged in a process called peripheral neuropathy. This can lead to a loss of feeling in your hands and feet.
  • Raynaud’s phenomenon can be associated with Sjögren’s syndrome. This disorder is caused by an occasional reduction in blood flow to your fingers and toes so that they feel cold and appear white.
  • Sjögren’s syndrome has an association with other autoimmune conditions of the liver and kidneys; therefore, jaundice or kidney stones may be seen in some people.
  • An underactive thyroid gland (another autoimmune condition) can also be associated with Sjögren’s syndrome. The thyroid gland produces hormones that regulate your metabolism. If incorrect amounts of these are produced, your metabolism slows down causing a variety of symptoms such as tiredness, low mood and aching muscles.

Causes of Sjögren’s syndrome

At the moment, the exact reasons why you may develop Sjögren’s syndrome aren’t known. However, it may be linked to infection from a virus, such as Epstein-Barr virus, which causes glandular fever. It is thought that the response of the immune system to attack your own organs may be triggered by a virus infecting your body. More research is needed to find out if this is the case.

There may also be genetic factors that make you less able to fight off infections and more likely to develop the condition.

Diagnosis of Sjögren’s syndrome

Your GP will ask about your symptoms and examine you. He or she may also ask you about your medical history.

Your GP may refer you to another doctor or health professional for further tests. Depending on your symptoms, this may be:

  • a rheumatologist - a doctor who specialises in identifying and treating conditions that affect the immune and musculoskeletal systems, particularly the joints and surrounding tissues
  • a dentist
  • an oral surgeon
  • an ophthalmologist - a doctor who specialises in eye health

You may have any of the following tests to check for symptoms of Sjögren’s syndrome.

  • Schirmer's test – a small piece of blotting paper is used to measure the volume of tears your eyes are producing.
  • Slit lamp examination – the ophthalmologist places a dye in your eye and examines it through a lamp that shines light through a very narrow slot (a slit lamp).
  • Measuring your saliva production – this may be by spitting into a paper cup or by having an MRI  or ultrasound scan of your salivary glands.
  • Blood tests – these can detect certain antibodies (called anti-Ro and anti-La), which are common in people with Sjögren’s syndrome.
  • Lip biopsy – this test involves removing one of the tiny salivary glands from your lower lip, and checking it under the microscope.

Treatment of Sjögren’s syndrome

There are a number of treatments that can help to relieve the symptoms of Sjögren’s syndrome, even though there is no cure for the condition.

Self-help

There are many things you can do yourself to help control your symptoms. 

  • If you have dry, irritable or sore eyes, try to stay away from environments that will make your eyes worse, such as air-conditioned, dusty or smoky places.
  • You may be advised to try specialist spectacles or contact lenses that help to keep in moisture and reduce dryness.
  • To reduce the symptoms of dry mouth, don't eat too many sweet foods or drink too much alcohol, as these can make your symptoms worse. If you smoke, try to stop because smoking also worsens symptoms. Take small sips of water throughout the day or suck ice cubes to keep your mouth moist.
  • You can also try chewing sugarless chewing gum or pastilles to increase your production of saliva.
  • You’re more likely to have tooth decay if you have a dry mouth. Take particular care of your teeth by regularly cleaning them and using dental floss. Try to limit the amount of sweet food and sugary drinks you have and visit your dentist regularly. Your dentist may advise you to use a high fluoride toothpaste, or a specialist toothpaste for dry mouth.
  • If you get dry skin, take showers rather than baths. Use mild soaps, and moisturise regularly.
  • You may find having a humidifier in your bedroom/sitting room is helpful.
  • You may find lubricants, such as KY jelly and oestrogen creams for vaginal dryness are helpful.

Medicines

If you have dry, irritable or sore eyes, your GP will probably suggest using eye drops or ointments. You may need to use these several times a day. There are many different types of eye drops. Some are only available with a prescription from your GP, others can be bought from a pharmacy. Your GP or pharmacist can advise you which is most suitable for you.

If you have a dry mouth, your GP may recommend trying artificial saliva. Artificial saliva can come in the form of a mouth spray, gels or lozenges. Some products also contain fluoride.

If you get ulcers in your mouth, your GP may prescribe an ointment to apply to the ulcers. If you get a fungal infection in your mouth, your GP may prescribe an antifungal medicine such as miconazole oral gel.

Your specialist may prescribe a medicine called pilocarpine. This stimulates saliva and tear production. This medicine may not work for all people with Sjögren’s syndrome and you may find that side-effects prevent you from taking it. You may need to try this medicine for a number of weeks before you notice any improvement.

You may need to take painkillers such as paracetamol or ibuprofen for painful joints associated with the syndrome. Antiarthritis drugs such as hydroxychloroquine are also helpful for arthritis and fatigue in Sjögren’s syndrome and may also slow the progression of the condition.

Hospital treatment

If your eyes are very dry, an ophthalmologist may sometimes suggest you have a minor procedure called punctal occlusion, to plug the tear ducts that drain tears from your eyes. This can help to keep your eyes moist.
 

For answers to frequently asked questions on this topic, see FAQs.

For sources and links to further information, see Resources.

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  • This information was published by Bupa's Health Information Team and is based on reputable sources of medical evidence. It has been reviewed by appropriate medical or clinical professionals. Photos are only for illustrative purposes and do not reflect every presentation of a condition. The content is intended only for general information and does not replace the need for personal advice from a qualified health professional. For more details on how we produce our content and its sources, visit the about our health information page.

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  • Publication date: July 2011