Systemic Lupus Erythematosus

This may be the first time you have ever read anything about lupus. We hope that this information helps you to understand this bewildering disease a little better.

What is Lupus?

Lupus is a disease which can affect joints, muscles and other parts of the body. Because of this, it belongs to the family of rheumatic diseases and in New Zealand people with lupus are often treated by a Rheumatologist.

However, lupus can also affect the skin, kidneys, lungs, heart, nervous system and blood and in particular the immune system. 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 which means that it lasts a long time. However, different symptoms of the disease may come and go. When the disease seems to go away we say that it is in remission; when it comes back we call it a flare. Some people have remissions which last for several years.

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How serious is Lupus?

Lupus is usually a mild disease which 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 which can make the disease very difficult to cope with.

Who gets Lupus?

Women are about 8 times more likely than men to be diagnosed with lupus, and it is usually diagnosed in the child-bearing years (age 15-45). However Lupus can affect children or older people. In New Zealand lupus is 3-4 times more common amongst New Zealand Maori and Pacific Island peoples.

What causes Lupus?

The simple answer to that is we don't know. Some people seem to inherit the tendency to get a disease like lupus. Research suggests that an unidentified virus may help to bring the disease on. A few drugs taken for conditions like high blood pressure, certain heart problems or tuberculosis, can cause symptoms just like lupus, but these symptoms disappear when the drug is stopped. Exposure to sunlight seems to trigger lupus in some people.

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Lupus symptoms

The first symptoms of lupus are very vague and it is often described as like having the flu all the time.

Other symptoms may include:

• Tiredness.
• Fever.
• Weakness.
• Loss of hair.

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.

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Treatment

Lupus is an unpredictable disease, but in most cases it can be successfully treated. However it may 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, anti-malarial 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.

Immuno-suppressive drugs are 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 which 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 possible.

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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 often and avoid doing things which 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.

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 a good chance of normal pregnancy.

Some people 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. Caring, supportive partner/family members and/or friends are 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.

Want to know more? Click brochure to download our Lupus brochure.

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