Last updated on September 20, 2023
Hello, I’m Dr Peter Landsberg, a rheumatologist at ArthritisCARE in Brisbane. I’d like to talk to you about diagnosis and management of lupus in Australia.
Lupus is an umbrella term used to describe a group of autoimmune diseases. Lupus presents unique challenges for both patients and healthcare professionals as it has no definitive test. This means it can be difficult to form a lupus diagnosis in Australia.
The challenges of lupus.
Lupus is caused by your immune system attacking healthy tissue, affecting any organ in your body and producing a wide range of symptoms. At a microscopic level, inflammatory cells and proteins bind together, float around the bloodstream and lodge into your tissues. Wherever these protein/inflammatory bundles end up, they cause damage. This is why there is such a variety of symptoms between patients. They can lodge in the tissues of your skin, joints, kidneys or any other organ.
The diagnostic difficulties of lupus.
Because of its elusive nature, wide variety of signs and lack of a single definitive test, lupus can be challenging to diagnose. It can affect people of all ages and backgrounds and is slightly more common in women. Lupus can range from very mild skin symptoms (like a bad sunburn), to more systemic and severe symptoms, such as kidneys leaking blood and protein, chest pain and other organ damage. This broad range of symptoms and patient background is why lupus can be so difficult to diagnose.
If you, or your GP, are concerned you have lupus contact ArthritisCARE to make an appointment with one of Rheumatologists. We are skilled at identifying the cause of your symptoms and developing a treatment plan to help you.
Types of lupus:
Rheumatologists also have the challenge of identifying the type of lupus you may be suffering. There are four major types of lupus:
- Systemic Lupus Erythematosus (SLE)
- Lupus of the Skin
- Drug-Induced Lupus
- Neonatal Lupus Erythematosus
Systemic Lupus Erythematosus (SLE)
The most common form of lupus is Systemic Lupus Erythematosus (SLE). SLE is an autoimmune disease that affects many of your organs, usually the skin, kidneys and joints. It can lead to chronic inflammation to the lining of blood vessels and other connective tissues and even impact your nervous system.
Lupus of the skin
Lupus of the skin can be further classified into three different types. A skin biopsy is generally needed to differentiate between these three types of skin lupus.
- Acute cutaneous lupus
- Chronic cutaneous lupus erythematosus, or discoid lupus erythematosus (DLE)
- Subacute cutaneous lupus erythematosus
Drug-induced Lupus
The signs and symptoms of this form of lupus are very similar to systemic lupus erythematosus (SLE), however it is as a result of prescription medication: The medications commonly associated with this type are:
- Hydralazine
- Anti-TNF
- Minocycline
- Isoniazid
- Procainamide
Neonatal Lupus Erythematosus
This form of lupus affects babies of those women who have anti-La and anti-Ro antibodies in their blood. The babys conduction system and heart are affected by these antibodies and they may be born with a skin rash, low blood cell count and problems with their liver. Fortunately, neonatal lupus erythematosus is quite rare.
Key signs and symptoms of lupus.
Lupus is known for a diverse range of signs and symptoms and you will often find that no two people present exactly the same. The most common lupus symptoms people may have are:
- Persistent fatigue
- Joint and muscle pain and swelling
- Skin rashes, often made worse by sunlight
- Fevers
- Multiple mouth ulcers
- Hair loss
How is lupus diagnosed in Australia?
Unfortunately, there are no blood tests or scans that indicate a definitive diagnosis of lupus.
Rather, Rheumatologists across the world have devised specific criteria based on a comprehensive assessment and various clinical and laboratory results. This strict criteria is how to diagnose lupus in Australia:
- Particular skin rashes, usually in the shape of a butterfly over the cheeks and nose
- Ulcers
- Blood and protein leaking from your kidneys.
- Marked hair loss
- Severe joint pain
- Severe arthritis
- Chest pain caused by inflammation of the lungs or heart, in particularly the pleura (lining around the lung) and the pericardium (sac around the heart),
- Anaemia, low white cell and platelet count.
Our job (and challenge) as Rheumatologists is to accurately assess your symptoms, medical history and clinical findings to determine if you fit this criteria. Lupus requires precise treatment and can impact things such as health insurance policies, so we have to be sure of your diagnosis.
Living with lupus.
Although there is no current cure, there are many ways to manage and treat lupus through medication and lifestyle changes.
Lifestyle considerations.
There are some changes you can make to your lifestyle to alleviate symptoms associated with lupus and to improve your immune system and overall health. The biggest tip is to identify what triggers flare-ups of your lupus so you can avoid them. Other considerations:
- Regular exercise
- A healthy diet
- Reduce stress and anxiety
- Quit smoking
- Limit alcohol consumption
- Ensure you use adequate sun protection
Lupus medications.
There are several different immune suppressing drugs and medications to provide temporary pain relief from joint and muscle pain. Rheumatologists will tailor medical therapy to your symptoms, and may prescribe several different types of medications, such as:
- Non-Steroidal Anti-Inflammatory Drugs (NSAIDS)
- Disease-Modifying Anti-Rheumatic Drugs (DMARDS)
- Corticosteroids
- Immunosuppressants
- Analgesics to relieve pain
Pregnancy and lupus.
Although most people find lupus will not affect their fertility, it is strongly recommended that women wait until their disease has stabilised before starting a family. Pregnant women with lupus are at increased risk of complications, therefore will be classed as a high-risk pregnancy. You will be monitored closely by a Rheumatologist and Obstetrician during your pregnancy to monitor your disease, flare-ups and any other concerns.
You can live a full life with this complex disease.
Lupus is characterised by a variety of symptoms and diagnostic challenges. However, despite these complexities with early diagnosis and effective management you can improve your quality of life. By working closely with healthcare professionals, maintaining a healthy lifestyle and following the advice of your Rheumatologists, you can achieve best possible health outcomes. There is no reason, with careful management, that people with lupus can’t lead full and healthy lives.
FAQs
Read through these commonly asked questions about lupus.
How common is lupus in Australia?
Lupus is a relatively rare disorder of the immune system. According to the Garvan Institute of Medical Research, Systemic Lupus Erythematosus (SLE) affects 1 in 600 Australians.
How serious is lupus?
The severity of lupus can vary from person to person, and depends on what organs are affected. Some individuals may only experience milder forms with skin rashes, whilst other people may face more severe forms or life threatening complications.
How is lupus identified in Australia?
Lupus is a complex disease of the immune system that has no specific diagnostic test. Rheumatologists will base their diagnosis on set criteria that use medical history, physical examination, skin rashes, blood tests for particular antibodies, urine testing for the presence of blood and protein and other symptoms.
Who is affected by lupus?
Systemic Lupus Erythematosus, or simply SLE, the most common form of lupus, is found in people between the ages of 15 and 45, with 90% of those diagnosed being female. Studies have also found that lupus in African American and Asian people can be more severe.
What are the symptoms of lupus?
The common symptoms of lupus are joint pain, stiffness or swelling, rashes, fever, lethargy and fatigue, feeling unwell and weight loss. Some people with lupus experience different symptoms, such as:
- Significant hair loss
- Muscle aches
- Headaches or visual problems
- Multiple mouth ulcers
- Abdomen pain
What are the complications of lupus?
There are several complications associated with lupus:
- Anaemia
- High blood pressure
- Kidney disease or poor kidney function
- Seizures
- Visual problems
- Blood clots
- Chest pain caused by inflammation
- Memory problems
- Anxiety or depression
- Mouth ulcers
Is there a cure for lupus?
Currently, there is no cure for lupus. However, with proper management and treatment, you can experience less frequent symptom flare-ups and lead an active life. Please reach out to the friendly team at ArthritisCARE if you have any more questions or concerns about lupus.