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Systemic lupus erythematosus

Published by Bupa's health information team, July 2008.

This factsheet is for people with systemic lupus erythematosus (SLE), or who would like information about it.

Systemic lupus erythematosus, or lupus, is a rare autoimmune disease. If you have lupus, your immune system recognises healthy cells as foreign and attacks them causing inflammation and damage. Your skin, joints and organs (for example the heart or kidney) can all be affected.

Discoid lupus erythematosus is a different type of lupus and only affects the skin. This factsheet will focus on systemic lupus erythematosus.

About lupus
Symptoms of lupus
Complications of lupus
Causes of lupus
Diagnosis of lupus
Treatment of lupus
Living with lupus
Further information
Questions and answers
Related topics
Sources

About lupus

Your body's immune system produces white blood cells and proteins called antibodies to destroy foreign substances, such as viruses and bacteria. If you have lupus, as with other autoimmune diseases, your immune system mistakes your own tissue as foreign and attacks it causing inflammation.

In the UK, one in every 3,000 people has lupus. You are most likely to develop lupus between your late teens and early 40s. If you are of African, Caribbean or Asian decent and a woman you are also more likely to develop lupus. Nine times as many women as men get lupus.

Symptoms of lupus

There are a number of different symptoms of lupus. They can range from mild to severe. Most people feel generally tired and unwell, and have a temperature. Other symptoms can include:

headache
mouth ulcers - which usually occur in clusters
painful joints, muscles or tendons - which affect about nine in every 10 people with lupus
a skin rash which may appear on your face, hands or wrists and can get worse in the sun
sensitive skin when in the sun
swollen glands
mild hair loss

Some people may have more serious symptoms because lupus can affect major organs in the body and stop them functioning properly. Lupus can:

cause inflammation of the kidneys - this can affect up to a third of people with lupus
affect the brain causing depression or psychosis (seeing or hearing things which aren't there) or you may have strange sensations such as burning or prickling
cause chest pains, coughing or shortness of breath because lupus is affecting the lungs
cause inflammation of the heart
affect the bone marrow causing anaemia

The vast majority of people with lupus have a mild disease with joint pains, rashes and tiredness. Life threatening symptoms are rare.

Complications of lupus

If you have lupus you may also have another autoimmune disease, such as antiphospholipid syndrome, Sjögren's syndrome or rheumatoid arthritis, as the conditions sometimes occur together.

If you are a woman you will have an increased risk of complications during pregnancy if you have lupus. These complications include miscarriage, pre-eclampsia, reduced growth or premature birth of your baby, and stillbirth. This risk depends upon how your lupus is affecting you. Ask your doctor for advice.

Causes of lupus

The exact cause of lupus is unknown but there are probably a number of factors involved. Your genetics are thought to be linked to lupus but the chance of inheriting lupus is quite small. There is only a one in 40 chance that you will develop lupus if your parent or sibling (brother or sister) has it. Your environment and your hormones may also influence the development of lupus or make it worse. The following have been associated with the development of lupus:

sunlight
Epstein-Barr virus
exposure to silica, pesticides or mercury

Medicine-induced lupus is caused by medicines such as minocycline, isoniazid, hydralazine, procainamide, chlorpromazine, sulfasalazine, losartan. Once you stop taking the medicine or after taking steroid medicines, if needed, symptoms usually stop.

Diagnosis of lupus

Your GP will examine you and ask you about your symptoms. He or she may take a blood sample. Your GP may then refer you to a rheumatologist for further tests. This is a doctor who specialises in conditions affecting the muscles and bones, particularly the joints and surrounding tissues.

Blood tests will detect the antibodies in your body which may be attacking your own tissues. These antibodies cause the symptoms of lupus. He or she may also ask you for a urine sample to send to a laboratory for testing. Depending on which organs are affected, further tests may include the following.

An ultrasound scan, which uses high-frequency sound waves to produce an image to look for any changes.
A CT (computerised tomography) scan which uses X-rays to build up three-dimensional pictures of the body.
An MRI (magnetic resonance imaging) scan which uses magnets and radiowaves to produce two- and three-dimensional pictures of the inside of the body.

Treatment of lupus

The treatments your doctor will advise will be specific for you. Different medicines will help different symptoms.

Self help

To help reduce the symptoms of lupus:

don't sunbathe - use high-factor sunblocks or sunscreens (factor 25 and over), a hat and clothing to protect your skin from the sun as much as possible
try to prevent infections, particularly chickenpox, by reducing contact with infected people
eat a healthy balanced diet that is low in saturated fat and contains fish oil
try not to get stressed

Medicines

NSAIDs

Non-steroidal anti-inflammatory medicines (NSAIDs) may be given to help control muscle and joint symptoms. If you take these medicines you may have side-effects such as stomach and bowel upsets, rashes and headaches. If you get indigestion you may need medication to reduce the acid in the stomach.

Steroids

Corticosteroid medicines such as prednisolone, betamethasone (eg Betnelan, Betnesol) and dexamethasone may be given for the rapid control of lupus or for more serious symptoms. Side-effects including stomach and bowel upsets, bone and tendon damage and hormonal changes occur with high doses but side-effects occur less often if you take a lower dose. Immunosuppressants can minimise the effects of these steroids if taken at the same time.

Immunosuppresant medications can be used to minimise steroid use in patients with more active disease. These include medicines such as azathioprine, methotrexate, mycophenolate mofetil, ciclosporin and cyclophosphamide. These medicines need regular blood tests to monitor side-effects such as liver and kidney changes.

Antimalarials

Antimalarials such as hydroxychloroquine or chloroquine can help milder symptoms such as joint pain, tiredness and skin rashes. Side-effects can include stomach and bowel upsets, headaches and skin reactions. You will also need to have regular eye tests as these medicines can affect the retina of your eye.

Immunoglobulins

Sometimes certain lupus symptoms (for example blood problems or kidney disease) may require infusions of immunoglobulins or plasmapharesis. Immunoglobulins help your body defend itself and may be given using an injection if you have lupus which is severely affecting your blood. Plasmapheresis is when blood is taken from the body to remove antibodies and is then returned. This may be used to treat symptoms of the brain but it isn't clear how effective this treatment is.

Monoclonal antibodies

Rituximab is a monoclonal antibody used to target cells which help produce lupus antibodies. There is some evidence that this medicine has been effective at treating lupus but it's not currently licensed for this use in the UK. Epratuzumab can also treat lupus in the short term but its use is also not currently licensed.

Skin creams

Skin rashes can be treated with other medicines including acitretin, dapsone, and topical steroid creams. Sunscreens over factor 25 or sun block help protect the skin from the sun.

Other medicines

In addition to the medicines used to treat lupus, adjunctive (preventative) treatment may be needed. For example, lupus affecting the central nervous system may need antidepressant, antipsychotic or anti-epileptic medications. Side-effects can include tremors, feeling sleepy and stomach and bowel changes. Side-effects are specific for the medicine you take.

Medicines such as amitriptyline, gabapentin or pregabalin may be required for nerve induced pain (neuralgia). Side-effects can include dizziness, tiredness and feeling sick.

Complementary therapies

Acupuncture may be helpful for some people but there is no scientific evidence that it's effective at treating lupus. It has though been proven to be helpful for certain conditions such as headache.

Living with lupus

If you are a woman you may be advised to not take a contraceptive pill which contains high doses of the hormone oestrogen as this may trigger lupus. If you take hormone replacement therapy (HRT) this may also cause lupus to flare up. Ask your doctor for advice before taking these medicines.

If you have lupus you have an increased risk of heart and lung disease. You will need to regularly visit your doctor to have blood and urine tests, and to check your blood pressure to monitor your lupus.

You may feel very tired. Research has shown that exercising regularly may help people with lupus feel fitter and happier day to day.

Further information

Arthritis Research Campaign
0870 850 5000
www.arc.org.uk