Systematic Lupus Erythematosus

What is Lupus?

Systemic lupus erythematosus (SLE), otherwise known as Lupus, is an autoimmune disease where the immune system attacks healthy tissues and organs, leading to inflammation and damage. 

Lupus can affect different parts of the body, including the skin, joints, kidneys, heart, lungs, and brain. 

But for some people, lupus may just affect the skin and/or joints. In other people, it may also affect the lungs, kidneys, blood vessels, brain or other parts of the body.

There are different forms of lupus, with SLE being the most common type. 

What are the Symptoms of Lupus?

Symptoms vary from person to person and may come and go at different times. The most common symptoms are:

  • Joint pain and/or swelling - especially in the hands or feet.
  • Skin rashes, made worse by being in the sun. Many people with lupus develop a characteristic butterfly-shaped rash on the face, often across the cheeks and nose. Other skin rashes and lesions may also occur.
  • Sores in the mouth or nose. 
  • Anaemia (low number of red blood cells).
  • Fatigue - persistent fatigue and low energy levels are common symptoms of lupus, often impacting daily activities.
  • Fever is a common symptom of lupus, especially during disease flares.

Many people with lupus have ‘flares’ (this is periods of time when their symptoms get worse). Flares can happen with no obvious cause.

There is no way of knowing how bad a flare will be or how long they will last. But they might happen more often during times of stress, or may be caused by sun exposure, infections, and pregnancy.

What Causes it?

It is not known what causes lupus. It might be a combination of factors like genetics, viruses, sunlight, stress and hormones acting together. Certain triggers, such as infections, sunlight, medications, and hormonal changes, can contribute to the development of lupus in susceptible people. The exact factor is yet to be proven in research.

How is it Diagnosed?

There is no one single test that can tell whether you have lupus. It can be difficult, and often takes time to diagnose lupus as the symptoms can be similar to other types of arthritis.

Your doctor will diagnose lupus from your symptoms, a clinical examination and various tests. This can include tests of the blood and urine, and organs such as your heart and lungs. .

What is the Treatment?

There is currently no cure for lupus. But, treatment has improved dramatically. New medicines are extremely helpful in controlling the condition.

With close follow-up and the right treatment, most people with lupus can expect to live a full and active life. But for some people it can cause serious and even life-threatening problems. 

Your doctor will tailor treatment to your symptoms and the severity of your condition. Unfortunately, there is no way of knowing exactly which treatment will work best for you. So, your doctor may need to try several different treatments before finding the right one for you. 

What can you do?

  • See your doctor - Your doctor will help coordinate your care. This includes making referrals to specialists like a rheumatologist for further tests and treatment. 
  • Learn about lupus and play an active role in your treatment - Not all information you read or hear about is trustworthy so always talk to your doctor or healthcare team about treatments you are thinking about trying.
  • Protect yourself from the sun -  If your skin is sensitive to the sun, make sure you avoid the sun during peak hours, and take steps to cover and protect your skin. 
  • Live a healthy life - Regular physical activity, a healthy diet and stopping smoking will help your overall health and wellbeing.
  • Acknowledge your feelings and seek support -  It is natural to feel scared, frustrated, sad and sometimes angry. As there is currently no cure for lupus it can affect many parts of your life. Be aware of these feelings and get help if they start affecting your daily life. 
  • Monitoring and Management of Complications - regular monitoring and management of complications such as kidney disease, cardiovascular disease, and osteoporosis are essential for people with lupus.

Living Well with Lupus

Living with lupus requires proactive management and self-care. Here are some tips for living well with lupus:

  1. Stay Informed: Learn as much as you can about lupus, its symptoms, triggers, and treatment options. Stay informed about the latest research and developments in lupus management.
  2. Work with Your Healthcare Team: Establish a good relationship with your healthcare team, including rheumatologists, nephrologists, dermatologists, and other specialists, to develop a personalised treatment plan tailored to your needs.
  3. Listen to Your Body: Pay attention to your body and how you feel. Pace yourself, prioritise rest, and avoid overexertion during flares.
  4. Seek Support: Joining one of our Online Support Groups or connecting with others living with Lupus in our Peer-Mentor Telephone Service 'Arthritis Assist' can provide valuable emotional support and practical advice. 
  5. Practice Self-Care: Practice self-care activities such as relaxation techniques, mindfulness, and stress management to reduce stress and promote overall well-being.

Download our free information sheet - Systematic lupus erythematosus (SLE or lupus)

How can we help? 

More information and support 

Download some of our free handy information sheets on lupus and managing arthritis symptoms. 

Register for Arthritis Assist to speak one-on-one with someone else living with arthritis. 

Join one of our online support groups to connect with other Australians living with arthritis. 

Have questions? Call our free infoline on 1800 011 041 to speak with a member of our health team. 

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