What is lupus?
Lupus is a chronic autoimmune disease that can affect many different parts of the body. If you have lupus, the body's immune system attacks its own normal cells.
There are many different types of lupus:
- Systemic lupus erythematosus (also known as SLE) can affect almost any organ or system.
- Discoid lupus is generally milder, with most people having only skin symptoms.
- Subacute cutaneous lupus is similar, but milder still.
- Drug-induced lupus is a reaction to a medicine that fades away after the medicine is stopped.
About 20,000 people in Australia and New Zealand have lupus. About 9 in 10 are women and the majority develop the condition between 15 and 45 years.
What are the symptoms of lupus?
Different people have different symptoms, and one person may have different symptoms at different times. Symptoms can be vague.
Lupus can be very unpredictable. Some people have relatively few symptoms after the initial flare up, while others have periods of fairly good health (known as remission) alternating with flare-ups of disease.
The most common symptoms include:
- pain, stiffness or swelling in joints (experienced by about one in 2 people with lupus)
- skin rashes which can appear or become worse after exposure to the sun (experienced by about one in 5 people with lupus). A 'butterfly rash' on the cheeks and nose is common
- feeling tired and weak (experienced by about one in 10 people with lupus)
Other fairly common symptoms are:
- loss of appetite and loss of weight
- hair loss
- muscle aches
- feeling generally unwell
- ulcers in the mouth
- inflammation of the lining of the lungs (the pleura) or the sac around the heart (the pericardium), making you feel short of breath or giving you pain in the chest
- kidney problems
- Raynaud’s phenomenon, in which fingers and toes turn blue or white in the cold
- problems with eyesight
- swollen glands
- problems with tendons, causing your fingers to pull in abnormal positions
- anaemia (a low level of haemoglobin, the oxygen-carrying protein in red blood cells)
What causes lupus?
Lupus begins when antibodies attack normal tissue, causing chronic inflammation and tissue damage. Antibodies are part of the immune system. It is not known what causes the formation of the antibodies that cause the problem. It is probably due to a combination of genetic, hormonal and environmental factors. Some of the possible triggers include:
- exposure to too much sunlight (or other UV light)
- changes in hormones (females aged 15 to 45 are most commonly affected)
- certain medicines and chemicals
How is lupus diagnosed?
The diagnosis is based mainly on your doctor talking to you and examining you. They will ask you a number of questions about your symptoms and then take some blood tests. These usually include an Anti Nuclear Antibody (ANA) test, which measures whether you have antibodies to your own tissues, and a range of other tests.
But it is important to know that there is no single test that gives a diagnosis of lupus. Sometimes, the diagnosis can’t be made straight away — it may take time. This can mean ensuring you follow up with your doctor and even record symptoms as they occur. Giving a good history to your doctor is very important in making a diagnosis early so the right treatment can be discussed.
How is lupus managed?
Most people with lupus are able to manage the disease and enjoy a good quality of life with effective treatments and the decision to follow a healthy lifestyle. You will get better results if you can work closely with your doctor and specialist.
Treatment for lupus is very individual and medicines are given depending on the severity of the disease and the organs involved.
Medicine most commonly used to manage a person with lupus include:
- non-steroidal anti-inflammatory drugs (NSAIDs) such as aspirin, ibuprofen or naproxen or Cox-2 inhibitors to reduce inflammation, muscle aches and arthritis
- medications used to treat malaria such as hydroxychloroquine and chloroquine that can also be added to reduce joint pain, skin rashes and fatigue
- corticosteroids such as Prednisolone that are very effective at reducing inflammation and will be used in higher doses to treat more serious complications of lupus, for example when the heart, lungs or nervous system are affected
- medications to suppress the immune system, such as methotrexate or cyclophosphamide, that are used for more severe disease usually under the supervision of a specialist doctor such as a rheumatologist as these medicines can have serious side effects
People with lupus need to take good care of their health, and maintain a healthy lifestyle. It's important to monitor and control other risk factors for ill-health such as smoking, high blood pressure, high blood fats, high blood sugars and being overweight.
The lifestyle that works best for people with lupus includes:
- getting plenty of rest
- avoiding and managing stress
- regular moderate exercise (without becoming too tired)
- working out what triggers your lupus so you can avoid it. Common triggers include being stressed, too much sun, having a cold or eating foods like alfalfa, tomatoes, potatoes or corn
- eating a healthy diet containing all of the food groups
- avoiding contact with people with infections
- quitting smoking, if you smoke
- drinking alcohol in moderation, if you drink
Other ways to manage lupus include:
- being well informed about lupus
- working closely with your treating doctors
- always taking your medicines as instructed
- joining a support group
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Last reviewed: August 2020