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Sjögren’s syndrome

Key points

  • Sjögren’s syndrome is a condition that affects your eyes and mouth, causing them to become dry.
  • It occurs when your immune system attacks the glands that produce fluid. These include the tear glands in your eyes and the salivary glands in your mouth.
  • There isn’t a cure but eye drops, artificial saliva and medicines to stimulate the glands can help ease your symptoms.

Sjögren’s syndrome (pronounced Shurgren's syndrome) is a condition that mainly affects your eyes and mouth, causing them to become dry.

About Sjögren’s syndrome

Sjögren’s syndrome is an autoimmune disease where your immune system attacks the glands that produce fluid. These include the tear glands in your eyes and the salivary glands in your mouth. The condition reduces the amount of fluid these glands produce.

Sjögren’s syndrome is one of the most common autoimmune diseases. At least half a million people in the UK are estimated to have Sjögren’s syndrome. However, it’s not known exactly how many people have the condition 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 20 and 30 and those over 50. Having dry eyes is a natural consequence of aging; Sjögren’s syndrome is separate to the dryness that may occur as you get older.

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

Symptoms of Sjögren’s syndrome

The most common symptoms of Sjögren’s syndrome 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
  • feeling tired and achy – you may also get joint and muscle pain

Other areas of your body can become drier than normal, so you may get:

  • vaginal dryness – making sexual intercourse painful
  • dry skin – making it itchy and sore
  • dry throat and airways – making you more sensitive to smoke or dust

These symptoms may be caused by problems other than Sjögren’s syndrome. If you have any of these symptoms, see your GP for advice.

Complications of Sjögren’s syndrome

Sjögren’s syndrome can be associated with other conditions, such as Raynaud’s phenomenon, anaemia, problems with your nervous system, and liver or kidney problems.

Complications of Sjögren’s syndrome can include the following.

  • Eye and eyelid infections. Dry eyes can cause irritation and lead to more frequent infections of your eyes and eyelids, and the cornea (the clear, outer surface of your eye)
  • Mouth infections and tooth decay. Saliva has antibacterial properties and helps to keep your mouth clean by washing away bacteria. Having less saliva in your mouth can lead to more frequent mouth infections and an increase in tooth decay.
  • Lymphoma. Some people with Sjögren’s syndrome may have an increased risk of developing lymphoma (a cancer of the lymphatic system). The estimated risk varies across studies so it’s difficult to say what the risk is. As part of your care, you will be monitored for lymphoma.
  • Nerve damage (called peripheral neuropathy). This can lead to a loss of feeling in your hands and feet. 

Causes of Sjögren’s syndrome

At the moment, the exact reasons why you may develop Sjögren’s syndrome aren’t known. If you have Sjögren’s syndrome in your family, you may be more likely to develop the condition.

Some doctors believe that Sjögren’s syndrome may be triggered by an infection, a virus or hormone changes, but as yet, there isn't any evidence to prove this.

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.

Sjögren’s syndrome isn’t often diagnosed until you have developed a related complication. Your GP may refer you to another doctor or health professional for further tests. For example an eye specialist (ophthalmologist), a dentist or oral surgeon. Your GP may also refer you to a rheumatologist (a doctor who specialises in identifying and treating conditions that affect the immune and musculoskeletal systems, particularly the joints and surrounding tissues).

You may have the following tests to confirm a diagnosis.

  • Schirmer’s test – a strip of blotting paper is used to measure the volume of tears your eyes are producing. The blotting paper is placed in the corner of your eye and folded over your lower lid. This makes your eyes water, making the paper wet. Your doctor will remove the paper after five minutes and check how much of it is wet.
  • Eye test – your eye specialist will place a dye in your eyes and examine them through a lamp that shines light through a very narrow slot (a slit lamp). The test makes it possible to see the film of liquid over the surface of each eye.
  • Saliva test – you may be asked to spit into a paper cup over five minutes to find out how much saliva you produce.
  • X-ray or MRI scan – to check your salivary glands.
  • Blood tests – to check for 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 is no cure for Sjögren’s syndrome. However, there are a number of treatments that can help to control your symptoms.

Self-help

There are many things you can do yourself to ease your symptoms and make day-to-day life easier. Some of the main ones are listed below.

If you have dry, irritable or sore eyes:

  • stay away from environments that will make your symptoms worse, such as air-conditioned, dusty or smoky places
  • consider wearing specialist wraparound glasses to help keep in moisture and reduce dryness
  • keep your eyelids and the surrounding areas clean to reduce your risk of infection

If you have a dry mouth:

  • don't eat too many sweet foods or drink too much alcohol, as these can make your symptoms worse
  • try to stop smoking if you do so because it will make your symptoms worse and reduce your blood circulation
  • use lip balm or petroleum jelly on your lips to stop them from getting dry and cracking
  • sipping water throughout the day or sucking ice cubes can help keep your mouth moist
  • try chewing sugar-free chewing gum or pastilles to stimulate your glands to produce 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 have dry skin:

  • take showers rather than baths and use a mild soap or a water-based cream
  • moisturise your skin three or four times a day
  • increase the humidity in your home – a humidifier or a bowl of water can help to increase humidity in your home

If you feel tired and achy:

  • pace yourself – for example, spread out any chores that need doing, rather than trying to do them all at once
  • make sure you have a comfortable bed and a relaxing bedtime routine
  • rest during the day when you need to do simple exercises to help release muscle tension and keep you mobile

If you hands and feet feel cold:

  • wear thicker socks and warm gloves to ease your symptoms
  • do gentle exercise to improve your circulation 

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 and you may need to try several to find one that works best for you. Some are only available with a prescription from your GP; others can be bought from a pharmacy.

It’s important to keep your eyes lubricated to prevent complications developing. If you’re applying drops more frequently than every four hours, it’s important that you use one that doesn’t have preservatives to prevent irritation. 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. Gargling and rinsing your mouth with a diluted chlorhexidine mouthwash such as Corsodyl can help ease stickiness in your mouth and throat. If you get a fungal infection in your mouth, your GP may prescribe antifungal medicines.

Your specialist may prescribe medicines (such as pilocarpine or cevimeline) to stimulate saliva and tear production.

You may need to take painkillers such as paracetamol or ibuprofen for painful joints associated with the syndrome. A medicine called hydroxychloroquine can help with tiredness and pain. This medicine can be used long term to help manage your symptoms.

Hospital treatment

If your eyes are very dry, your eye specialist may suggest you have a minor procedure called punctal occlusion, to plug the tear ducts that drain fluid from your eyes. This means any tears that you produce (or eye drops) stay in your eyes and don’t drain away quickly.

Living with Sjögren’s syndrome

You may find day-to-day life with Sjögren’s syndrome frustrating at times. It can be an unpredictable condition because symptoms can vary in severity from person to person. Living with joint pain, tiredness and discomfort can affect you emotionally as well as physically. If you’re worried about how you’re feeling, speak to your GP for advice.

You may find it helpful to contact support groups and organisations for information. Some of these organisations will be able to put you in touch with other people with Sjögren’s syndrome. Ask your GP for more information.

Reviewed by Natalie Heaton, Bupa Health Information Team, November 2013.
 

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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