Sjogren’s disease

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Sjögren's disease is an autoimmune disorder. You may also see it called Sjogren's syndrome, which was its earlier name. In this condition, the body's immune system attacks the glands that make fluid, such as the tear glands and the saliva glands.

The effects of Sjögren's disease can be widespread. Certain glands become inflamed, so they produce fewer tears and less saliva. That is what causes the two main symptoms, dry eyes and dry mouth.

Women are the people most commonly affected. In them, the glands that keep the vagina moist can also be affected, which leads to vaginal dryness.

Sjögren's disease is an autoimmune condition. That means the immune system, which should protect your body from infection and illness, reacts abnormally and starts attacking healthy cells and tissue.

In Sjögren's disease, the immune system attacks the tear glands, the saliva glands and other secretory glands throughout the body.

Nobody knows why this happens. Research suggests it's triggered by a mix of genetic, environmental and, possibly, hormonal factors. Some people are thought to be more vulnerable to the disease from birth, and certain events, such as an infection, can set off the problems with the immune system.

Doctors classify Sjögren's disease as either:

• primary, when the disease develops by itself and not as the result of another condition
• secondary, when the disease develops together with another autoimmune disorder, such as lupus or rheumatoid arthritis

Sjögren's disease can be hard to diagnose. Its symptoms look a lot like those of other conditions, and there's no single test that confirms it.

Your doctor will ask about your symptoms. They will also carry out a test to see how dry your mouth and eyes are.

There is no cure for Sjögren's disease, but treatments can help control the symptoms.

Dry eyes and a dry mouth can usually be helped with artificial tears and artificial saliva.

Good care of your eyes and mouth matters, because your risk of infection is greater with this condition. Looking after them can help prevent problems such as corneal ulcers and tooth decay.

In severe cases, your doctor may recommend medicine or surgery.

Sjögren's disease can sometimes lead to complications. If the reduced tear production isn't treated, for example, your eyesight could be permanently damaged.

The disease also raises your risk of non-Hodgkin lymphoma, a cancer of the lymph glands. The chance is still low, at around 5%.

Women with Sjögren's disease have a higher risk of having children with a temporary "lupus" rash or heart abnormalities. Any pregnancy will be closely monitored for possible problems.

Sjögren's disease most often affects people aged 40 to 60, and about 90% of cases are in women.

It's hard to say exactly how many people have the disease, because many don't see a doctor about their symptoms.

The symptoms people report most often with Sjögren's disease are a dry mouth and dry eyes, and these can lead to other symptoms of their own. But dryness like this is common in old age, and most people with dry eyes or a dry mouth don't have Sjögren's disease.

Many women also have vaginal dryness, which can make sex painful.

A dry mouth can lead to:

• tooth decay and gum disease
• dry cough
• difficulty swallowing and chewing
• hoarse voice
• difficulty speaking
• swollen salivary glands (located between your jaw and ears)
• repeated fungal infections in the mouth (oral thrush), the symptoms of which can include a coated or white tongue

Dry eyes can cause a number of symptoms:

• burning or stinging eyes
• itchy eyes
• a feeling that there's grit in your eyes
• irritated and swollen eyelids
• sensitivity to light (photophobia)
• tired eyes
• mucus discharge from your eyes

These symptoms can get worse when you're:

• in a windy or smoky environment
• in an air-conditioned building
• travelling on an aeroplane

In more serious cases of Sjögren's disease, the immune system can attack other parts of the body. This can cause symptoms and conditions such as:

• dry skin
• tiredness and fatigue (these are common and can lead to total exhaustion)
• muscle pain
• joint pain, stiffness and swelling
• vasculitis (inflammation of blood vessels)
• difficulty concentrating, remembering and reasoning

Doctors don't know exactly what causes Sjögren's disease. They think it is linked to a problem with the immune system.

Your immune system normally protects you from infection and illness by making antibodies. These attack bacteria and viruses, and that helps stop you from becoming ill.

An autoimmune condition makes the immune system react in the wrong way. The antibodies stop going after foreign cells, such as bacteria, and start attacking your body's own healthy cells and tissue.

In Sjögren's disease, the parts of the body usually affected are the tear, saliva and vaginal glands. Together these are known as the exocrine glands.

The antibodies damage the exocrine glands, so they can no longer work normally. There's some evidence that the immune system also damages the nerves that control these glands, which makes them work even less well.

The immune system can go on to damage other parts of the body, such as muscles, joints, blood vessels, nerves and, less commonly, organs.

Most researchers believe primary Sjögren's disease is triggered by a mix of genetic and environmental factors.

Some people are born with particular genes that make them more likely to have a faulty immune system. Then, many years later, something in the environment, possibly a common virus, sets off the immune system so that it stops working properly.

The female hormone oestrogen also seems to play a part. Sjögren's disease mostly affects women, and symptoms usually begin around the time of the menopause, when oestrogen levels start to fall. Falling oestrogen can add to dryness, and that dryness could make the condition easier to notice.

Sjögren's disease can occur alongside other autoimmune conditions, such as rheumatoid arthritis or lupus. When it does, doctors call it secondary Sjögren's disease.

Your saliva glands and tear glands do a lot to protect your mouth and eyes. That's why the symptoms of Sjögren's disease can spread widely and be so troublesome.

We usually notice our tears only when we cry, but a thin layer of tears, known as the tear film, covers your eyes all the time. This matters in Sjogren's disease, where the eyes can become dry.

Tears are a mix of water, proteins, fats, mucus and infection-fighting cells. They do several jobs. They:

• lubricate the eye
• keep the eye clean and free of dust
• protect the eye against infection
• help keep your vision steady

Saliva does several useful jobs in your body, and these are the main ones:

• it keeps your mouth and throat naturally moist and lubricated
• it helps digestion by moistening food, and it contains enzymes that can break down certain starches
• it works as a natural disinfectant (saliva contains antibodies, enzymes and proteins that protect against some common bacterial and fungal infections)

Sjögren's disease can be hard to diagnose, because its symptoms look a lot like those of other health conditions.

You may end up seeing different health professionals for different symptoms. A dentist for a dry mouth, an optician for dry eyes, a gynaecologist for a dry vagina. This can sometimes make it difficult to reach a firm diagnosis.

If you have any symptoms of dryness, especially in your eyes and mouth, see your doctor.

Doctors who know this condition well have put together a short set of screening questions. They can help if you're worried you may have Sjögren's disease.

If you answer "yes" to most of the questions below, you may have Sjögren's disease and will probably be advised to have further tests.

• Have you had daily, persistent, troublesome dry eyes for more than three months?
• Do you keep having a sensation of grit in your eye?
• Do you need to use eye drops containing tear substitutes more than three times a day?
• Have you had a daily feeling of dry mouth for more than three months?
• Do you keep getting swollen salivary glands (located between your jaw and your ears)?
• Do you frequently drink liquids to help you swallow food?

Doctors use several tests to diagnose Sjögren's disease:

• tear break-up time and Schirmer tests
• a lip biopsy
• blood tests
• salivary flow rate

These are explained below.

An ophthalmologist (a doctor who specialises in treating eye conditions) usually carries out the tear break-up time test and the Schirmer test.

Tear break-up time measures how effective your tear glands are. The doctor drops a non-toxic dye onto the surface of your eye. From the colour of the dye, they can see how well your tear film is working and how long your tears take to evaporate.

A slit lamp is also used for this test. It's a low-power microscope with a high-intensity light source that can be focused to shine in a narrow beam. With it, the specialist can examine your tear glands more closely.

For the Schirmer test, small strips of blotting paper are placed into your lower eyelid. After five minutes, they're removed so the doctor can see how much of the paper has been soaked with tears.

In a lip biopsy, the doctor removes a small piece of tissue from the inside of your lip and looks at it under a microscope. First, a local anaesthetic is injected into the inner surface of your lower lip to numb it. Then a small cut is made, and a few of your minor salivary glands are taken out.

If the tissue shows clusters of lymphocytes (a type of white blood cell), this can point to Sjögren's disease.

Doctors use blood tests to look for two antibodies called anti-Ro and anti-La (also known as SS-A and SS-B). Your immune system produces these when it has been affected by Sjögren's disease.

But these antibodies turn up in only about 60% of people with Sjögren's disease. So a negative blood test result doesn't rule it out, and you can still have the condition.

A salivary flow rate test checks how much saliva your glands make. Usually you'll be asked to spit as much saliva as you can into a cup over five minutes. The saliva is then weighed or measured. If the flow rate is unusually low, it can point to Sjögren's disease.

There's no cure for Sjögren's disease, but treatments can ease symptoms such as dryness of the eyes and mouth. The disease affects everyone differently, so your treatment plan will be tailored to suit you.

Mild to moderate dry eye, which is common in Sjogren's disease, can usually be treated well with eye drops containing "artificial tears". This is a liquid that mimics your own tears, and you can buy these drops from a pharmacist without a prescription.

There are many types of eye drops, so you can try different brands until you find the one that suits you best. If you're using drops regularly (more than three times a day), choose one that doesn't contain preservatives. There's evidence that too much exposure to preservatives can damage the surface of the eye.

If your eyes become irritated, a short-term course of eye drops containing corticosteroids may be recommended. Long-term use isn't recommended, though, because corticosteroids can cause serious side effects.

To keep the chance of side effects as low as possible, you'll be prescribed the lowest effective dose for the shortest possible time.

If you have Sjogren's disease, wearing glasses helps slow the loss of tears from your eyes. It cuts tear evaporation by up to 30%, and you can get the most out of this with specially made glasses called moisture chamber spectacles. They wrap around your eyes like goggles, which helps hold in moisture and keeps irritants away from the eyes.

Some people used to feel embarrassed about wearing them. Modern designs look like sports glasses, though.

Punctal occlusion is a widely used technique for Sjogren's disease. Small plugs are placed in the tear ducts, which are the channels the tears drain into, and this seals them. The idea is that your eyes stay better protected by tears.

Doctors usually try temporary silicone plugs first, to see whether they help. If they do, more permanent plugs can be used.

There are a few things you can do to keep your mouth moist if you have Sjogren's disease:

• keep up good oral hygiene, to prevent tooth decay and gum disease
• drink more fluids
• chew sugar-free gum, which helps your mouth make more saliva
• suck ice cubes, which help lubricate your mouth and ease the dryness
• use mouth rinses regularly, to soothe your mouth and protect it against infection

If you smoke, try to quit. Smoking irritates the mouth and makes saliva evaporate faster.

Several saliva substitute products can help keep your mouth moist if you have Sjogren's disease. They don't do what real saliva does in protecting against infection, though, so you'll still need to look after your mouth and teeth very carefully.

You can get saliva substitutes as a spray, a lozenge (a medicated sweet), a gel or a gum. Your doctor or pharmacist can tell you which one suits you best.

Doctors often use the medicine pilocarpine to treat the dry eyes and dry mouth that come with Sjogren's disease. It works by stimulating the glands to make more saliva and tears.

Pilocarpine can cause side effects, including:

• hyperhidrosis (excessive sweating)
• nausea
• diarrhoea
• heartburn
• abdominal (stomach) pain
• an increased need to go to the toilet

For some people these side effects are mild. Others find that the side effects outweigh the benefits.

Don't take pilocarpine if you have asthma or chronic obstructive pulmonary disease (COPD), or if you're pregnant or breastfeeding.

Hydroxychloroquine has been shown to slow down the immune system's attack on the tear and saliva glands in Sjogren's disease. It can also help ease any related muscle pain, joint pain and stiffness.

You'll need to take hydroxychloroquine for several weeks before you notice any improvement, and it could be six months before you feel the full benefit of the treatment.

Side effects are uncommon and usually mild. They include:

• nausea
• skin rash
• loss of appetite
• stomach cramps
• vomiting

In very rare cases, hydroxychloroquine can damage the retina and affect your vision. You'll probably be asked to have an eye examination before you start treatment, so that your retina can be checked. After you begin, regular eye examinations are also recommended (usually at least once a year).

Hydroxychloroquine shouldn't be used by breastfeeding women.

Some soaps and creams are made for people with dry skin. Your pharmacist or doctor can advise you.

Vaginal dryness, which can happen with Sjogren's disease, can be treated with a lubricant. Some women also use oestrogen creams or hormone replacement therapy (HRT).

Muscle and joint pains in Sjogren's disease can be treated with an over-the-counter non-steroidal anti-inflammatory drug (NSAID), such as ibuprofen. If this doesn't work, see your doctor, because stronger NSAIDs are available on prescription.

NSAIDs can raise your risk of stomach ulcers and internal bleeding, particularly if you take them for a long time.

A dry mouth can make NSAIDs hard to swallow. If that's your problem, you can try an NSAID cream that's rubbed into the affected joints.

NSAIDs aren't recommended for pregnant or breastfeeding women, or for people who already have risk factors for cardiovascular or kidney conditions.

A few simple habits can help prevent many of the problems that come with Sjögren's disease:

• have a dental check-up every six months
• keep up good dental hygiene, which means brushing, flossing and using mouthwash regularly
• avoid eating too many sweet foods
• avoid strong and perfumed soaps, and use the special creams and soaps your pharmacist can give you
• avoid dry environments, such as air-conditioned offices, whenever you can
• avoid drinking too much alcohol

Sjögren's disease isn't usually life-threatening, but it can be linked to more serious problems.

People with Sjögren's disease are estimated to be 44 times more likely to develop non-Hodgkin lymphoma than people without the condition. Non-Hodgkin lymphoma is a cancer of the lymphatic system. This is a series of vessels and glands (lymph nodes) spread throughout your body, much like your blood vessels.

The higher risk may sound alarming, but the chance is still small. Non-Hodgkin lymphoma affects only around 5% of people with Sjögren's disease.

Still, if you have Sjögren's disease, you should know the main early symptom of non-Hodgkin lymphoma. It is a painless swelling in a lymph node (gland), usually in the neck, armpit or groin. Report any swollen lymph nodes to your doctor.

If dry eyes in Sjogren's disease aren't treated, they can become inflamed, and ulcers can form on the surface of your eyes (these are called corneal ulcers). Corneal ulcers that are left untreated can lead to loss of vision and permanent damage to your sight.

If you have Sjögren's disease and you're planning a pregnancy, ask your doctor to test you for certain antibodies. These antibodies can be present in Sjögren's disease, and they are known to cause a temporary lupus rash in newborn babies. In very rare cases, they can also cause heart defects in babies.

If the antibodies are found, there's no reason why you can't continue with the pregnancy. Your child may need additional specialist care during the pregnancy and after the birth.

Several other conditions have been linked to Sjögren's disease, including:

• peripheral neuropathy, a condition that often involves loss of sensation in the hands and feet
• Raynaud's phenomenon, where blood flow to the hands is restricted and they can feel cold, numb and painful
• kidney problems, such as inflammation or kidney stones
• an underactive thyroid gland (hypothyroidism), which can lead to tiredness and weight gain
• irritable bowel syndrome (IBS), which can cause abdominal pain and irregular bowel movements
• teeth cavities