Lupus (SLE)

An Information Booklet

About this booklet

This booklet is written for people with lupus and their families and friends. It explains how lupus develops, how it affects different parts of the body, how it can affect people in different ways, and how doctors diagnose it. It then explains how it can be treated and offers tips and advice on living with it more easily. Near the end of the booklet you will find information on how to contact the Arthritis Research Campaign (arc), and a few suggestions for further reading. There is also a glossary of medical words. These words appear in italics when they are first used in the booklet.

Introduction

Lupus is an illness that mainly affects women during their child-bearing years. It is caused by a fault in the body's immune system. The immune system normally protects us by fighting infections. In people with autoimmune diseases (of which lupus is one example), the immune system starts to attack body tissues ('auto' means 'self'). This causes inflammation in those tissues. The effect this will have depends on which part of the body has been attacked by the immune system. This means that different people with lupus have different symptoms, depending on which part of the body is being attacked. For example, where the skin is attacked the main symptom is a rash, but if the joints are attacked the main symptom is joint pain.

The effect of lupus therefore varies greatly from person to person. For many people lupus represents little more than a nuisance condition, but for some the disease is very troublesome, even life-threatening. This uncertainty is a challenge for both the individual and the doctors who are trying to help.

There are two main forms of lupus. One form is called discoid lupus. This form affects only the skin. The other form, systemic lupus, involves the skin and joints and may involve internal organs such as the heart or kidney as well. The full name of this is systemic lupus erythematosus. This booklet deals only with systemic lupus erythematosus (sometimes shortened to SLE). Wherever the word lupus appears in this booklet, it means SLE, not discoid lupus.

Who gets lupus?

Lupus affects mainly young women. It is about nine times as common in women as in men and it is more common in Africans and Caribbeans than Asians, and more common in Asians than in white people. Only about 1 in 15 cases begin after the age of 50 and it very rarely develops after the age of 60. Around 1 in 250–500 women of Afro-Caribbean origin develop lupus, compared to 1 in 1000 Chinese women and 1 in 4000 white women.

What causes lupus?

Although we know that lupus is caused by the immune system attacking the body, we do not know exactly why that happens. The problem with the immune system arises from a complex combination of factors, including environmental factors (such as ultraviolet light and infections), the balance of hormones in the body, and genetic factors. Lupus is not inherited in the family in the way that, for example, blue eyes are inherited. Most people with lupus do not have parents or children with lupus. However, some genes that are inherited from one's parents do seem to contribute to the development of the disease.

The immune system makes proteins called antibodies. Most antibodies are helpful because they attack germs that could otherwise cause infection. In lupus the body makes antibodies that can attack various body tissues. These are also known as autoantibodies. Blood tests for these autoantibodies are useful in making the diagnosis of lupus.

What are the commonest symptoms of lupus?

Lupus can mimic many different diseases. This is very important because most of those diseases are more common than lupus. For example, severe tiredness is a very common symptom of lupus but is also a symptom of other conditions such as diabetes, anaemia, underactive thyroid glands or fibromyalgia (see arc booklet 'Fibromyalgia'), all of which occur more commonly than lupus does. A person who feels very tired may become worried that he or she has lupus, but in fact is much more likely to be tired for some other reason.

It is important to note that many people with lupus suffer only tiredness, joint pains and skin rashes. Though these symptoms can be upsetting and inconvenient they are not dangerous or life-threatening and these people do not usually need to be treated with strong drugs such as corticosteroids ('steroids').

Fever, weight loss and swelling of the lymph glands (lymphadenopathy) are also common lupus features which may be confused with other conditions, including cancer. On occasion, a biopsy has to be taken of lymph-gland tissue to make sure about the diagnosis.

In the next section we will describe how lupus can affect different parts of the body. Remember that most people with lupus only have effects in one or a few parts of the body. Even if you have lupus, many of the symptoms described below may never affect you personally.

Which parts of the body might be affected?

Skin and mouth

It is common for a rash to develop over parts of your body which are exposed to the sun: the face, wrists and hands. However, sometimes these rashes can affect other parts of the body. A rash over the cheeks and the bridge of the nose (called a 'butterfly rash') is especially common. You may develop groups of mouth ulcers (not just the one or two that most people get from time to time) and these can come back repeatedly.

Some people with lupus notice that their fingers change colour in cold weather, going first very pale, then dark blue and finally red. This is called Raynaud's phenomenon, and may sometimes be painful. Raynaud's phenomenon also occurs in people who have other autoimmune diseases, such as scleroderma, but it should be stressed that most people with Raynaud's do not go on to get lupus or any other disease. (See arc booklet 'Raynaud's Phenomenon'.)

Hair

Some loss of hair is common with lupus. This is a minor problem for most people but occasionally can lead to quite serious hair loss. As with the other features of this disease hair loss may 'come and go', being more troublesome when the disease is active. The hair often grows back when the disease activity is brought under control. Although steroid injections can be tried, sometimes people with serious hair loss will wear a wig.

Joints

Many people with lupus have joint pains – especially in the small joints of the hands and feet – which may flit from one set of joints to another quite quickly. Unlike rheumatoid arthritis, lupus does not usually cause joints to become permanently damaged or deformed, although joint pain and swelling can be the main symptoms of the disease. Perhaps 1 in 20 people with lupus develop more severe joint problems. Fewer than 1 in 20 have hypermobile and deformed joints. This is called Jaccoud's arthropathy.

Kidneys

Around 1 in 3 people with lupus may develop significant inflammation of the kidneys. This does not usually cause problems unless the disease is very severe. Your urine can be tested with a special plastic stick which is coated with various chemicals (a dipstick). This simple test can show if there is protein or blood in the urine, which is important because it helps doctors recognise that there is a problem in the kidney at a very early stage. Drug treatment can then be used to stop it getting worse and this means that lupus rarely causes severe damage to the kidney, as long as it is treated properly. However, some people with lupus can still develop kidney failure. Those people can be treated by modern forms of kidney treatment including dialysis or transplantation.

Blood pressure

Lupus can cause high blood pressure, particularly if the kidneys are involved. Where people need to be treated with steroid tablets for their lupus, these tablets may also cause an increase in blood pressure (see 'How can lupus be treated?'). Treatment with drugs to suppress the immune system (see 'How can lupus be treated?') can often control and occasionally cure high blood pressure caused by kidney involvement. In addition, many effective drugs are available which specifically reduce blood pressure (anti-hypertensives).

Brain and nervous system

You may feel depressed and anxious from time to time. It can be hard to tell whether this is part of the disease itself or simply the normal reaction to having a serious illness. Many people have problems in coming to terms with or coping with the disease. It is important to share these feelings with the doctor or other health care professionals looking after you. The medical team can also help you with counselling if you need it. Migraine affects as many as 1 in 3 people with lupus. Lupus can sometimes mimic other neurological conditions such as epilepsy or schizophrenia by causing fits or feelings of paranoia respectively. Drugs are available that will control or cure these problems but they usually have to be prescribed for several months.

Heart and lungs

Occasionally lupus may affect these organs directly. More often, it inflames the lining tissues around the heart and lungs (the pericardium and pleura). This causes pericarditis or pleurisy, both of which cause breathlessness and sharp pains in the chest, which are worse when taking a deep breath. Rarely, large amounts of fluid may develop in these lining layers, causing severe shortness of breath. This symptom can be treated successfully by removing the fluid.

Other organ involvement

Lupus can affect the bone marrow, causing anaemia and a reduction in the number of platelets (cells which help the blood to clot) and/or white blood cells. People with lupus can suffer swelling of the lymph glands, for example in the neck, which may cause discomfort. Some people with lupus have a tendency to develop blood clots in veins or arteries. This is usually caused by antiphospholipid antibodies (see arc booklet 'Antiphospholipid Syndrome'). Some of these antibodies can also affect pregnancy (see 'Lupus in special situations: conception and pregnancy').

Less frequently lupus can affect the gut, pancreas, liver or spleen, causing pain in the belly. Rarely, lupus can affect the eyes causing painful red eye or changes in eyesight.

How do doctors diagnose lupus?

A diagnosis of lupus is made based upon a combination of what you have told the doctor, what the doctor found by examining you, and the results of blood tests. The tests are important because, as noted earlier, many of the symptoms of lupus can be found in other diseases as well. The tests make it clear that the problem is actually lupus and not something much more common and less serious, like fibromyalgia. The main tests used are as follows:

• Anti-nuclear antibody (ANA) test for auto­antibodies. If you have a negative ANA you almost certainly do not have lupus (about 95% of people with lupus are ANA positive). If you have a positive ANA you might have lupus but you could also be perfectly healthy because we know that this test can be positive in some healthy people.
• Anti-DNA antibody test If you are positive in this test, lupus is highly likely. It is almost never positive in people who don't have lupus. The anti-DNA test level usually goes up when lupus becomes more active so it is useful for doctors to measure it every time you have blood taken. This helps them decide how much treatment you need for your lupus.
• Anti-Ro antibody test If you are positive in this test you may be more likely to get skin rashes. You may also suffer from dry eyes or dry mouth. This is called Sjögren's syndrome (see 'What other diseases can affect me if I have lupus?'). Pregnant women with anti-Ro antibodies have a small risk (about 1 in 50) that their babies will have neonatal (newborn) lupus syndrome. This means that the baby may have a rash and/or a slow heartbeat. Even though 98% of babies born to mothers with anti-Ro will be fine, it is important to do regular scans of the baby's heart during the pregnancy.
• Antiphospholipid antibody test If you are positive for these antibodies you may have an increased risk of miscarriage (see 'Lupus in special situations: conception and pregnancy') and also of developing blood clots.
• Complement level test 'Complement' refers to a set of proteins in the blood that protects us from infections. Complement levels go down when lupus is more active. The main complement measurements used in lupus are called the C3 level and the C4 level.
• Erythrocyte sedimentation rate (ESR) test This measures how quickly the cells in a tube of blood settle to the bottom of the tube. This happens faster in people with very active lupus. A combination of rising anti-DNA and falling complement levels (often accompanied by a high ESR test) is very helpful in deciding whether a person is likely to have a flare-up of lupus soon.
• Kidney and liver function tests These are carried out regularly so that any problems caused either by the disease itself or as a side-effect of the drugs being used can be recognised quickly and dealt with.
• Blood cell counts Checking the haemoglobin (low haemoglobin means that a person has anaemia – see Glossary), white and red blood cell numbers and the platelet count is important. All of these cells are made in the bone marrow, so these tests help doctors to find out whether the bone marrow is being affected by either the disease or the drugs used to treat it.

Depending on which organ the doctor suspects might be involved, a wide variety of tests are available to check the function of the heart, lungs, liver and spleen. These include x-rays, ultrasound scans, computerized tomography (CT) scans and magnetic resonance imaging (MRI) scans. The kidneys can also be checked with further tests if necessary, such as kidney filtration tests.

How can lupus be treated?

Lupus cannot be cured but it can be controlled.

If you have joint pains you can often be treated with non-steroidal anti-inflammatory drugs (NSAIDs) (see arc leaflet 'Non-Steroidal Anti-Inflammatory Drugs'). NSAIDs can damage the lining of the stomach and cause bleeding. The newer 'COX-2 drugs' are less likely to cause this problem, but they have been linked with increased risks of heart attack and stroke, so they are not suitable for people who have had either in the past, or for people with uncontrolled high blood pressure. If you are on NSAIDs on a long-term basis (more than 6 months) your doctor may do blood tests to check for a fall in the haemoglobin level in the blood.

Skin rashes can be treated with creams containing steroids and/or with hydroxychloroquine tablets. Hydroxychloroquine and similar drugs are called anti­malarials because they are also used to treat malaria. They are also effective at treating tiredness caused by lupus. A very small number of people who take hydroxychloroquine (about 1 in 2000) can develop side-effects in their eyes. The risk is so small that there is much debate among doctors as to whether eye tests need to be carried out regularly for people taking hydroxychloroquine. Most doctors continue to ask for eye tests as a precaution, although very few have ever seen any serious problems due to this drug. (See arc leaflet 'Hydroxychloroquine'.)

If you have more serious complications, such as pleurisy or pericarditis, you will usually be given steroids. These drugs were introduced in the late 1940s and are remarkably effective, sometimes life-saving. The dose prescribed will be kept as low as possible to minimise the possible side-effects. These include lowered resistance to infections, osteoporosis (thinning of the bones), high blood pressure and diabetes. (See arc leaflet 'Steroid Tablets'.) Often, people with pericarditis or pleurisy will only need to take steroids for a short time (a few months).

Some people need to take steroids for longer periods. This is true in the more severe, but less common, forms of lupus such as inflamed kidneys, severe anaemia or a very low platelet count. In these cases you will usually need high doses of steroids together with other drugs including azathioprine, ciclosporin, cyclophosphamide, methotrexate and mycophenolate. These drugs are called immunosuppressive drugs because they work by suppressing the immune system. This means that it does not attack the body's own tissues so aggressively. However, it also means that the immune system is not as good at protecting the body from infections. Becoming prone to infections is one side-effect of being treated with these powerful drugs. It is important to have regular blood and urine tests when you are taking these drugs to check that they are not causing side-effects. The doctor will usually reduce the dose of immunosuppressive drugs as quickly as possible as the activity of the disease subsides, but it may not be possible to stop them entirely. A continuing low dose may be necessary to stop the disease flaring up again. (See arc leaflets 'Azathioprine', 'Ciclosporin', 'Cyclophosphamide', 'Methotrexate', 'Mycophenolate'.)

A treatment revolution?

Most of the drugs we use for severe lupus were not originally developed to target this disease. They were first used for other diseases, such as cancer, and later tried in lupus. They suppress the whole immune system and so can often cause side-effects as well as treating lupus. Encouragingly, new drugs are now being developed which specifically target the parts of the immune system involved in causing lupus. We hope that these drugs will have fewer side-effects. Several of these new drugs are now being tested in large-scale, international trials. In the next decade several of these new agents are likely to be used routinely to treat people with severe lupus.

A particularly promising new approach is to remove B-lymphocyte cells using a drug called rituximab (see arc leaflet 'Rituximab'). These cells are responsible for the production of harmful autoantibodies so that removing them reduces the amount of autoantibodies and the tissue damage that they cause.

What are the long-term prospects if I have lupus?

For many people lupus is often no more than a nuisance, because it makes them feel tired and achy but not seriously ill. For others it can be a very troublesome and unpredictable condition. For the minority with one of the serious forms of lupus (e.g. kidney or brain lupus or severe anaemia), it has a major effect on their life. For this minority, lupus can be life-threatening, but it is important to stress that with modern treatments the disease can be brought under control. Overall a person diagnosed with lupus has an 85% likelihood of being alive 15 years later. If you have one of the more serious forms of lupus you should be treated by a rheumatologist, if possible one with a special interest in this condition. For some people, treatment may be given in a specific lupus clinic. Only careful monitoring over many years will make sure the disease is neither over- nor under-treated, so it is essential for all people with lupus to be assessed regularly.

In the long term a particular concern is that some people with lupus have an increased risk of having a heart attack or stroke. Many research groups around the world are looking into reasons for this and arc is supporting some of this research. In general, young women have a very low risk of heart attacks and stroke. Even though this risk increases in people with lupus it is still low because most of those people are young or middle-aged women. To minimise this risk it is important to stop smoking and to discuss with your doctor whether you need treatment for any increased level of cholesterol and blood pressure.

What can I do to help myself?

There are a number of things you can do to help yourself:

Keep out of the sun

Avoid sunbathing. Too much ultraviolet light can cause the skin rash to flare and sometimes the lupus in the internal organs can flare up too. If you have to go to a hot climate, use a sun-blocking cream, factor 25 or greater. This is available on prescription for people with lupus.

Avoid infections

If you have lupus, then you are more susceptible to infection. Take sensible precautions and avoid those family and friends with obvious known infectious diseases, especially chickenpox. You may already be on immunosuppressive drugs for the disease, which will also increase your susceptibility.

Watch what you eat

People are very interested in whether altering the diet can help to control lupus. Unfortunately, the evidence is very limited. There is some evidence to suggest that a diet low in saturated fat and supplemented by fish oil may be helpful. (See arc booklet 'Diet and Arthritis'.)

Avoid stress

Where possible, try to avoid situations which you know will cause you stress.

Lupus in special situations

Conception and pregnancy

More information about lupus and pregnancy is given in a special section in the arc booklet 'Pregnancy and Arthritis'.

If you have lupus you should use contraceptive pills which contain only progesterone or low-dose oestrogen, or consider physical methods of contraception (such as the condom or the cap). This is because oestrogen can in some cases make the disease more likely to flare up. If you are given hormone replacement therapy (HRT) after the menopause as a treatment for osteoporosis there is the risk of a flare. About 1 in 7 women with lupus who start HRT develop a flare of the disease.

There is conflicting evidence about whether pregnancy itself is more likely to make lupus flare up. However, if your disease is well under control at the time the baby is conceived, and you do not have kidney disease, you will probably go through pregnancy with little trouble. If you do have kidney disease, then you may well have increased protein in your urine during the later stages of pregnancy. The doctors looking after your pregnancy should keep a careful watch on this and consult your rheumatologist if necessary. If you have high levels of antiphospholipid antibodies, then you are more likely to suffer a miscarriage. Treatment with aspirin and/or heparin may reduce this risk. (See arc booklet 'Antiphospholipid Syndrome'.)

Pregnant women with anti-Ro antibodies will need to be seen in a foetal medicine unit so that scans of the baby's heart can be done during the pregnancy. This is important to identify the rare (1 in 50) cases where anti-Ro antibodies cause the baby to have a slow heartbeat.

Doctors are naturally worried about using drugs during pregnancy. It is usually safe to use steroids and there are now many examples of the safe use of hydroxychloroquine and azathioprine throughout pregnancy. However, your doctor will try to avoid using drugs if possible.

Lupus in childhood

Lupus is rare in children. It does not usually occur before the age of 5, although it has been seen in children as young as 2. The symptoms and parts of the body affected are somewhat different from those seen in adults. One large study showed, for example, that blood-related problems like anaemia are more common in children. Broadly speaking, though, children with lupus will be treated in much the same way as adults.

Lupus after 50

Relatively few cases begin in this age group. It is often thought that people with lupus can experience a decrease in severity of the disease after the menopause. However, there is one extra problem for older people with lupus if they are treated with steroids. As mentioned earlier, one of the side-effects of steroids is to cause osteoporosis. This can increase the risk of bone fractures, as older people are already more likely to have osteoporosis because of their age. Treatment with bisphosphonates and some newer drugs is often prescribed. (See arc booklet 'Osteoporosis'.) Overall, in people over 50 lupus tends to be less severe, but the side-effects of treatment can be more of a problem than in younger people.

What other diseases can affect me if I have lupus?

About 1 in 3 people with lupus have another autoimmune disease as well. For example, about 1 in 8 people with lupus also suffer from Sjögren's syndrome. This causes dryness of the eyes and mouth. (See arc booklet 'Sjögren's Syndrome'.) About 1 in 10 people with lupus have the antiphospholipid antibody syndrome (mentioned earlier) which causes a combination of increased risk of blood clots in the veins and arteries, increased rate of miscarriage, and sometimes a low level of platelets in the blood (low platelet count). Fewer than 1 in 10 people with lupus develop an autoimmune disease which affects the thyroid gland, in particular the type which makes the gland underactive. Much less often people with lupus may also develop rheumatoid arthritis, or inflammation of the muscles (myositis).

Questions and answers

Is the disease hereditary?

Although genetic factors are involved in the development of the disease, many other factors also play a part. There is only a small chance (1 in 40) of your child developing lupus in later life if you have it yourself.

Can you catch lupus from another person?

No – lupus is not contagious.

How much should I rest?

There is no simple answer to this question. When the disease is active, you may not feel like doing very much. When the disease is inactive, you will not gain anything from 'excessive' resting. Activity will help to keep your mind off the disease. Many people with lupus find that tiredness is a significant problem. As mentioned earlier, other obvious causes of fatigue include anaemia and an underactive thyroid gland. These problems can be shown on a blood test and often corrected quite easily. Your body will dictate how much sleep and rest are needed, though some drugs, particularly hydroxychloroquine and steroids, will help to balance the situation.

What about other forms of treatment?

Acupuncture may relieve pain. The effectiveness of other forms of alternative pain relief may depend very much on whether you believe they will work.

My hands and feet go blue in cold weather. Can I do anything about this?

This problem is almost certainly due to Raynaud's phenomenon, which is caused by spasm (constriction) of the small blood vessels of the hands and feet. Make sure you keep warm and wear thick gloves and socks/tights. Nifedipine tablets can help if it is troublesome. If it becomes very severe, powerful drugs to dilate the blood vessels, such as prostacyclin, may need to be given by injection.

Does stress affect the disease?

Worrying will probably not affect how your lupus develops. However, it will obviously make you feel much worse. Your doctor may be able to help by arranging for you to see a psychologist who will suggest ways of coping designed for you as an individual. This strategy is something which many people find very helpful.

Does the weather make any difference?

The climate will not alter the course of the disease although, as mentioned earlier, you should avoid exposing yourself to strong sunlight. Although cold, damp weather may make the problem seem worse, it does not do any real damage. Some of the worst cases are actually found in people who live in tropical climates.

Are immunisations safe?

In the main, yes. However, we do not recommend 'live vaccines' if you are on more than 20 mg prednisolone daily or immunosuppressive drugs (such as mycophenolate, azathioprine, ciclosporin, cyclophosphamide). These live vaccines include yellow fever, 'live' typhoid and 'live' oral poliomyelitis (polio). Make sure that you check with your doctor before being immunised.

Research

In the past 20 years a considerable amount of research has been carried out to improve the methods of assessment of people with lupus and to try to improve our understanding of the cause of the disease. arc has been at the forefront of attempts to fund such research. It is essential that we develop drugs which can target abnormal cells more specifically than the currently available steroids and other immunosuppressive drugs. Several encouraging reports in small numbers of patients have now described the successful use of some of these new drugs. While this is very encouraging, larger studies are needed to determine what role this type of treatment might eventually play in the management of lupus.

Summary

Lupus causes troublesome symptoms rather than serious problems in most people. However, effective treatment is available for the vast majority of people with lupus.

Glossary

Anaemia – a shortage of haemoglobin (oxygen-carrying pigment) in the blood resulting in a decrease in the ability of the blood to carry oxygen around the body. Anaemia can be caused by lupus itself or by a shortage of iron in the diet.

Antibodies – blood proteins which are usually formed in response to germs, viruses or any other substances which the body sees as foreign or dangerous. The role of antibodies is to attack these foreign substances and make them harmless.

Antiphospholipid antibodies – antibodies which form against phospholipids (a type of fat) which often make up the surface of cells.

Autoantibodies – antibodies which, instead of reacting with germs or viruses, react with the body's own tissues.

Autoimmune disease – a disorder of the body's defence mechanism (immune system), in which antibodies and other components of the immune system attack the body's own tissues.

Computerized tomography (CT) scan – a type of scan which records images of sections or 'slices' of the body using x-rays. These images are then transformed by a computer into cross-sectional pictures.

Corticosteroids – drugs which have a very powerful effect on inflammation. Often called 'steroids' for short. The adrenal glands in the body produce a 'natural' sup­ply but much larger doses are used to treat autoimmune diseases. Prednisolone is the most commonly used corticosteroid.

Diabetes – the most common form is properly called diabetes mellitus. This is a condition in which the body does not deal with sugars properly due to damage to the pancreas gland causing a lack of the hormone insulin.

Dialysis – a method of separating particles in a liquid using a semi-permeable membrane. In kidney dialysis the blood is circulated through a special machine which uses this method to remove waste materials or poisons from the blood.

Immune system – the tissues which enable the body to resist infection. They include the thymus, the bone marrow and the lymph nodes.

Immunosuppressive drugs – Drugs that suppress the actions of the immune system.

Jaccoud's arthropathy – a rare form of lupus in which the joints of the fingers become deformed.

Magnetic resonance imaging (MRI) – a type of scan which uses high-frequency radio waves to build up pictures of the inside of the body. It works by detecting water molecules in the body's tissue.

Non-steroidal anti-inflammatory drugs (NSAIDs) – a large family of drugs, prescribed for different kinds of arthritis, which reduce inflammation and control pain, swelling and stiffness.

Oestrogen – one of a group of hormones in the body which control female sexual development. Synthetic oestrogen is used in the most common oral contraceptive pill known as the 'combined' pill. The combined pill contains both oestrogen and progesterone.

Osteoporosis – a condition where bones become less dense and more fragile, which means they break or fracture more easily.

Pericarditis – inflammation of the membranes around the heart. The more acute (short-lasting) form causes fever and chest pain, and fluid may build up in between the membranes, causing shortness of breath.

Pericardium – the membranous lining around the heart.

Platelets – disc-shaped cells in the blood which help the blood to clot when there is bleeding.

Pleura – the linings of the lungs and of the inside of the chest wall.

Pleurisy – inflammation of the pleura (the lining of the lungs and of the inside surface of the chest wall), causing pain on deep breathing.

Progesterone – one of a group of hormones in the body. In women it is responsible for preparing the lining of the uterus for pregnancy. Synthetic progesterone is used in the oral contraceptive pill (both in the 'combined' pill, which contains oestrogen and progesterone, and in the progesterone-only pill).

Raynaud's phenomenon – a circulatory problem which causes the blood supply to certain parts of the body to be greatly reduced. It can make the fingers and toes go temporarily cold and numb and they turn white, then blue, then red. Raynaud's phenomenon can also occur with the condition scleroderma.

Rheumatoid arthritis – a common inflammatory disease affecting the joints, mainly starting in the smaller joints in a symmetrical pattern – that is, for example, in both hands or both wrists at once.

Ultrasound scan – a type of scan which uses high-frequency sound waves to examine and build up pictures of the inside of the body.

Useful reading

The following can be bought from bookshops or from LUPUS UK (see below):

Lupus Questions and Answers: Everything You Need to Know by Robert G Lahita and Robert H Phillips. Avery 2004. ISBN 9781583331965.

Understanding Lupus by Graham Hughes. JSC 1996. ISBN 9781901298000.

Coping with Lupus: A Practical Guide to Alleviating the Challenges of Systemic Lupus by Robert H Phillips. Avery 2001. ISBN 9781583330951.

Useful addresses

The Arthritis Research Campaign (arc)
PO Box 177
Chesterfield
Derbyshire S41 7TQ
Phone: 0870 850 5000
www.arc.org.uk

As well as funding research, we produce a range of free information booklets and leaflets. Please contact the address above for a list of titles or, on this website, see Publications for people with arthritis.

Arthritis Care
18 Stephenson Way
London NW1 2HD
Tel: 020 7380 6500
Helpline (freephone): 0808 800 4050
www.arthritiscare.org.uk

Offers self-help support, a helpline service, and a range of leaflets on arthritis.

LUPUS UK
St James House
Eastern Road
Romford
Essex RM1 3NH
Phone: 01708 731251
www.lupusuk.org.uk

A support group for people with lupus and their families.

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