systemic lupus erythematosus

What is lupus?

Lupus is a disease which can affect joints, muscles and other parts of the body.

There are two main types:

• discoid lupus - which affects only the skin
• systemic lupus - which involves the joints and sometimes internal organs as well.

Lupus is often described as an auto-immune disease. This means that for some reason people with lupus seem to develop antibodies (which usually fight bacteria and viruses) that attack healthy tissue instead. This produces inflammation in different parts of the body, resulting in pain and swelling.

Lupus is a chronic disease (a disease which lasts a long time). However, different symptoms of the disease may come and go. When the disease seems to go away we say it is in remission; when it comes back we call it a flare. Some people have remissions that last for several years.

How serious is lupus?

Lupus is usually a mild disease that occasionally leads to serious problems. Most people with lupus can live a normal life providing they take sensible precautions and control the worst aspects of the disease through proper treatment. About 5% of people with lupus have serious problems with internal organs of the body that make the disease very difficult to cope with.

Who gets lupus?

About 10 times as many women as men get lupus and it is usually diagnosed in the child-bearing years (age 15-45). Lupus can, however, affect children or older people. In New Zealand lupus is 3-4 times more common among New Zealand Maori and Pacific Island peoples.

What causes lupus?

The simple answer is we don't know. Some people seem to inherit the tendency to get a disease like lupus. There is no single gene which puts people at risk of developing lupus. It seems most likely that between 20 and 80 genes contribute to the risk, and environmental factors also contribute to whether the disease develops, and when.

Environmental factors include: exposure to UV light (sun-exposure), various infections, possibly chemicals in the environment, factors related to stress (not well-identified), and female hormonal activity (eg. the oestrogen-containing contraceptive pill or pregnancy).

These factors combine to influence the immune system in such a way that immune abnormalities result which cause the disease to develop (or recur).

A few drugs taken for conditions like high blood pressure, certain heart problems or tuberculosis, can cause symptoms just like lupus but these symptoms always disappear when the drug is stopped.

Lupus symptoms

The first symptoms of lupus are very vague and are often like having the flu all the time. It usually starts with joint pains, especially in the small joints of the hands and feet, and may "flit" from one set of joints to another quite quickly. Fatigue is one of the most common symptoms.

Other symptoms may include:

• skin rashes 
• fever
• headaches
• recurring mouth ulcers
• depression 
• hair loss.

The doctor is likely to:

• check for any skin rashes
• do a thorough examination of joints and glands checking for any swelling or pain
• test blood and urine to determine how much inflammation there is at any time and to see whether any internal organs are affected by the disease.

Every person with lupus is different, and symptoms can vary a great deal from person to person. Some people have difficulty with depression, some experience severe headaches and others may find that painful, swollen joints are the worst features of the disease.

Treatment

Lupus is an unpredictable disease, but in most cases it can be successfully treated. It may, however, take a little time to work out the best way to treat each individual.

Medications

People who have mild lupus may manage to control the disease simply by taking aspirin or one of the similar anti-inflammatory drugs. These drugs control pain and reduce inflammation. Some people find that these drugs upset their stomachs and for this reason they should always be taken with food.

For slightly more serious cases of lupus, antimalarial drugs seem to be effective in reducing inflammation and controlling skin problems. No one quite knows how or why these drugs work but they seem to increase the body's resistance to sunlight. If you are taking these drugs you should have your eyes checked regularly as large doses taken for a long time can affect them.

Steroids are the strongest anti-inflammatory drugs available and are often used when lupus becomes more serious. They can reduce pain and inflammation very quickly and can control some kidney problems, arthritis and inflammation around the body's internal organs before these problems become severe.

Like all powerful drugs, they can have side effects such as weight gain, rounding of the face, easy bruising or slight thinning of the bones. Because of this, your doctor will try to use the lowest dose possible to control your disease. It is very important that you consult your doctor before changing your dose of steroids as stopping them or reducing the dose quickly can make you very sick.

Immunosuppressive drugs are usually only used in lupus when other drugs have failed to control the disease. They dampen down the body's immune system and prevent inflammation; often they are used in conjunction with steroids.

They are particularly effective in treating kidney problems that do not respond to other forms of treatment. These drugs tend to lower the body's resistance to infection so it is important to treat injuries or infections quickly and to avoid them if at all possible.

Avoiding sunlight

Sunlight can produce skin rashes in people with lupus. It can also cause flares of the disease. People with lupus who find that they are sun-sensitive should try to avoid all exposure to the sun between 11.00am and 3.00pm and wear protective clothing or sunscreens with a sun protection factor of 15+ at other times. Exposure to sunlight should be particularly avoided at high altitudes, or in water.

Rest

'Lupus fatigue' is probably the most common feature of the disease. People with lupus often feel too tired to do anything. It is important that you try to rest more often and avoid doing things that you find exhausting. It is much better to put aside an hour every day to rest rather than end up flat on your back for a week! Relaxation exercises can be very helpful.

Lifestyle factors

Lifestyle changes can minimise symptoms and aid an improved sense of well-being. Preventive measures can reduce the risk of flares (eg, avoiding excessive sun exposure and using sunscreens to help prevent rashes). In addition, regular exercise can help prevent muscle weakness and fatigue. Immunisation will protect against specific infections and maintaining a healthy lifestyle by getting enough rest, reducing stress, eating a balanced diet and quitting smoking, all helps.

Pregnancy

Most people with lupus do not have difficulty conceiving. It is important that you talk with your doctor about any likely risks but unless you have blood pressure or kidney problems you have good chances of a normal pregnancy.

Some have a flare of the disease after the baby is born. This can be difficult to cope with when there are so many other new pressures. A caring, supportive partner is essential at this time. Repeated miscarriages can be caused by lupus and in some cases this can be the only manifestation of the disease.

Recent research in New Zealand and overseas has helped to deliver healthy babies to women who had previously been unable to carry children to full-term.

Living with lupus

At times people with lupus often feel angry, depressed and isolated. It is not easy to accept the loss of good health, or constant pain, or changes in your physical appearance. Talking about how you feel with someone who is close to you is very important but sometimes you may feel that you need to confide in someone who has similar problems.

Lupus support groups are in many locations in New Zealand. Contact your local division at Arthritis New Zealand.

These groups aim to assist lupus people by providing practical support and by giving people the opportunity to share experiences with others who have lupus.

Original material supplied by Arthritis New Zealand. Reviewed by everybody, July 2005.