What is lupus and what are the symptoms?

Lupus is a condition often shrouded in mystery. Presenting with a huge range of symptoms, it’s tricky to diagnose, tough to treat and, right now, there’s no cure.

But sufferers are being given hope thanks to a new UK trial that could result in a groundbreaking treatment to eradicate the need for lupus patients to be on lifelong medication.

Three UK patients have undergone CAR T-cell therapy, which until now has only been used to treat cancer patients. The therapy is administered just once and genetically modifies the body’s immune system to clock and attack cells that are an issue, long term.

About 20,000 Australians are thought to have the condition, with more women than men affected. And several famous faces – including singer and actor Selena Gomez and former American Idol judge Paula Abdul – have shared their experience with the condition.

Here’s what you need to know about the chronic condition.

What is lupus?

“Lupus is a chronic long-term condition affecting the immune system,” says Abbas Kanani, head pharmacist at Chemist Click. “The immune system attacks tissues, instead of protecting against diseases and infections, which causes extreme fatigue, joint pain and skin rashes.”

What causes it?

“While the exact cause remains unknown, lupus is believed to stem from a combination of genetic, environmental and hormonal factors,” explains head pharmacist Carolina Goncalves at Pharmica.

“Symptoms can vary greatly from one individual to another, usually appearing in cycles of flare-ups, where symptoms worsen, followed by periods of remission when symptoms ease.

“Because of this unpredictability, living with lupus can be challenging, requiring both medical management and lifestyle adjustments to handle its ups and downs.”

What are the symptoms?

“Main symptoms are painful joints and muscles, feeling unrested and extremely tired even after adequate rest, and rashes, which tend to appear after sun exposure,” says Mr Kanani. “They are typically located on the cheeks or nose. For some people, symptoms can flare up or settle down, while others have constant symptoms.”

Other signs include: headaches, mouth and nose ulcers, fever without infection, hair and weight loss, swollen glands – usually in the neck, armpits or groin, depression and anxiety, chest or tummy pain, changes in the colour of your fingers and toes when cold, anxious or stressed, and heightened sensitivity to sunlight, which can trigger or worsen rashes.

“Lupus has a broad range of symptoms, often leading it to be called ‘the great imitator’, as it can resemble many other illnesses,” adds Ms Goncalves. “Because lupus symptoms overlap with many other conditions, diagnosis can be complex and often requires blood tests, physical exams and sometimes biopsies of affected tissues.”

What are the treatment options?

As there is no cure, and CAR T-cell therapy is in its very early stages. “Lupus treatment focuses on managing symptoms and preventing organ damage,” says Ms Goncalves.

Some options include: NSAIDs (nonsteroidal anti-inflammatory drugs) used to reduce inflammation and pain, especially in joints, while anti-malarial medications like hydroxychloroquine are commonly prescribed for skin rashes and joint pain, and may reduce flare frequency.

Corticosteroids like prednisone help control inflammation, especially during flares, but are generally used at the lowest possible dose due to potential long-term side-effects.

Immunosuppressive drugs, such as azathioprine and methotrexate, suppress the immune system and are used for moderate to severe lupus, especially if organs are affected.

When and how should you seek help?

“If you’re experiencing persistent symptoms like unexplained fatigue, joint pain, rashes or low-grade fevers, it is advised to consult a healthcare professional. Your GP can evaluate these symptoms and, if lupus is suspected, may refer you to a rheumatologist, a specialist in autoimmune diseases,” says Ms Goncalves.

“Early diagnosis and treatment are important and can help prevent possible complications in major organs. If you experience severe symptoms, such as chest pain, difficulty breathing or unusual swelling, seek medical attention promptly (call 999), as these could indicate serious organ involvement.”

What else should you know about living with lupus?

“Managing lupus often means identifying and understanding personal triggers, as flare-ups can be brought on by factors like stress, UV exposure and infections. Practising sun protection, managing stress and maintaining a balanced lifestyle can be highly effective in keeping symptoms under control,” notes Ms Goncalves.

“Since lupus is a chronic condition, looking after mental health is equally important. Living with a long-term illness can be challenging, and support from mental health professionals or lupus support groups can provide valuable emotional and practical support.”

Have you been diagnosed with lupus? Why not share your experience in the comments section below?

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