What is lupus?

Lupus is a chronic autoimmune illness. This means that your immune system attacks your body’s own normal cells. Lupus can affect many different parts of your body.

There are several different types of lupus:

• Systemic lupus erythematosus (SLE) — this can affect almost any organ or body system. It mostly affects your skin and joints, but sometimes it can affect your heart, lungs, kidneys or brain.
• Discoid lupus — this is a milder illness, with most people having only skin symptoms.
• Subacute cutaneous lupus — this is even milder and mostly causes rashes and joint pain.
• Drug induced lupus — this is a reaction to a medicine. It fades away after you stop taking the medicine that triggered your lupus.
• Neonatal lupus — this can occur if lupus-causing antibodies (a type of protein in your blood) transfer from the mother to the baby during pregnancy. They can cause a rash, liver, blood and sometimes heart problems. Neonatal lupus usually resolves about 6 to 12 months after birth when the antibodies degrade.

Most people with lupus have mild symptoms. About 9 in 10 are female and the majority develop the condition between 15 and 45 years of age.

What are the symptoms of lupus?

Different people have different symptoms. Individuals can also experience different symptoms at different times. Symptoms can be vague. During a ‘flare’, symptoms may suddenly get worse.

Lupus can be very unpredictable. Some people have few symptoms after the initial flare. Others have periods of feeling well (known as remission) alternating with flares of disease.

Common symptoms include:

• pain, stiffness or swelling in your joints, most often in your hands and feet
• skin rashesthat become worse after exposure to the sun
• fever
• feeling tired, weak and unwell
• weight loss

People with lupus may have different types of skin rashes. Some people have a ‘butterfly rash’, which is a red or purple rash on the cheeks. Some people have red patches on areas of skin that are exposed to the sun. The patches may look like red rings. In discoid lupus, the patches can cause scarring or a change in skin colour.

Other symptoms may include:

• hair loss
• muscle aches
• headaches
• mouth ulcers
• abdominal pain
• Raynaud’s phenomenon

What causes lupus?

Lupus develops if your immune system makes antibodies that attack your own normal cells. This causes inflammation, pain and damage in the parts of your body that are attacked.

It is not known what causes your immune system to make these antibodies. 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)
• certain medicines and chemicals
• infections
• certain foods
• stress
• pregnancy

When should I see my doctor?

See your doctor if you have symptoms of lupus, to work out what is causing them.

If you have lupus, talk to your doctor if you are planning to become pregnant. Your doctor can help you get your symptoms under control before pregnancy. They can also check that any medicines you take are safe during pregnancy.

How is lupus diagnosed?

The diagnosis is based mainly on your doctor talking to you and examining you. They will ask you questions about your symptoms and refer you for blood tests. These usually include an anti-nuclear antibody (ANA) test, which checks whether you have antibodies to your own cells. You might also have a urine test, a chest x-ray and tests to check your heart function. Some people may need to have a biopsy.

However, there is no single test that gives a diagnosis of lupus. Sometimes, the diagnosis can’t be made straight away — it may take time.

How is lupus managed?

There is no cure for lupus, but most people are able to manage their symptoms and enjoy a good quality of life. This usually requires a combination of medicines and maintaining a healthy lifestyle.

Treatment for lupus is very individual and depends on the severity of your disease and the organs involved. You might need to try a few different medicines to see what works for you. Your doctor may refer you to a rheumatologist (a specialist in joint inflammation).

Medicines

Medicines that can control symptoms of lupus include:

• non-steroidal anti-inflammatory medicines (NSAIDs) for joint and muscle pain
• medicines used to treat malaria, such as hydroxychloroquine, for joint pain, skin rashes and fatigue
• corticosteroids, such as prednisolone, for more serious complications of lupus
• other medicines to control your immune system

Lifestyle measures

You can help control lupus by including the following lifestyle measures:

• Get plenty of rest.
• Avoid and manage stress.
• Get regular moderate exercise — without becoming too tired.
• Maintain a healthy diet.
• Quit smoking.
• Manage your alcohol
• Protect your skin from the sun and reduce your exposure to sunlight.

Other strategies to help you live with lupus include the following:

• Learn as much as you can about lupus.
• Work out what triggers your lupus, so you can avoid it.
• Work closely with your doctors.
• Always take your medicines as instructed.
• Join a lupus support group.
  • Lupus Association of NSW
  • Lupus Victoria
  • Lupus WA
  • Arthritis South Australia
  • Lupus Association Queensland

What are the complications of lupus?

People with lupus may develop:

• anaemia
• high blood pressure or blood clots
• inflammation of the lining of your lungs or heart
• kidney problems
• depression and anxiety
• seizures or vision problems
• osteoporosis

Resources and support

The Lupus Association of NSW offers tips for living with lupus, managing pain and diet.

If you think you may have lupus and don’t know what to do, talk to your doctor or call healthdirect on 1800 022 222 at any time to speak to a registered nurse (known as NURSE-ON-CALL in Victoria) for more information and advice.