Lupus - Systemic Lupus Erythematosus pamphlet
Systemic Lupus Erythematosus pamphlet
This may be the first time you have seen or read anything about lupus. We hope that this pamphlet 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 vears.
How Serious Is Lupus
Lupus is usuallv 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 make the disease verv difficult to cope with.
Who Gets Lupus
About 8 times as many women as men get lupus and it is usually diagnosed in the childbearing years (age 15 - 45). Lupus can. however, 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 always disappear when the drug is stopped. Exposure to sunlight seems to trigger lupus in some people.
The first symptoms of lupus are very vague and are often like having the flu all the time.
Other symptoms may include:
- muscle 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 mav find that painful, swollen joints are the worst features of the disease.
Lupus is an unpredictable disease but in most cases it can be sucessfully treated It may however. take a little time to work out the best way to treat each individual.
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. Vhey 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 verv 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 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 at all possible.
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 11.00 am and 3.00 pm and wear protective clothing or sunscreens with a sun protection factor of I 5+ at other times. Exposure to sunlight should be particularly avoided at high altitudes, or on water.
"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 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.
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 very 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 had similar problems.