Lupus symptoms to know as NHS trial 'ground-breaking' treatment for incurable disease

Lupus is a disease that is often shrouded in mystery and confusion as to what it actually entails.

Its sheer variety and severity of symptoms associated with the condition make it difficult to diagnose or treat, and currently there is no cure. But sufferers of this chronic disease have been offered major hope because the NHS is trialling a ground-breaking treatment that could end lupus patients’ lifelong reliance on medication.

CAR T-cell therapy, which has previously only been used to treat cancer, has been offered to three lupus patients in the UK. In only one round of treatment, the therapy genetically modifies the body’s immune system to identify and attack problematic cells in the long-term.

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Around 69,000 Brits are thought to live with lupus, and global stars including Selena Gomez and Lady Gaga have even revealed their battles with the condition. But despite its prevalence, little is known about lupus.

What is lupus?

Lupus is a chronic long-term condition that affects the immune system. Instead of protecting against disease and infection, a sufferer’s immune system attacks healthy tissues. This causes extreme fatigue, skin rashes, and joint pain.

What causes lupus?

The exact cause of lupus remains unknown, but experts believe that the condition stems from a combination of genetic, environmental and hormonal factors.

It appears that people who have an inherited predisposition for lupus may develop the disease when they come into contact with an environmental trigger. These potential triggers include infections, sunlight, and medications to treat blood pressure, seizures, or bacterial infections.

What are the symptoms of lupus?

Lupus presents a wide variety of symptoms, which has earned it the nickname "the great imitator", as it can resemble many other illnesses.

The main symptoms to look out for are aching joints and muscles, extreme fatigue, and rashes that appear after exposure to sunlight and typically cluster around the cheeks and nose. Other indicators of lupus include headaches, mouth and nose ulcers, fever without infection, and losing hair or weight.

Sufferers can also experience depression and anxiety, chest or stomach pain, and swollen glands in the neck, armpits, or groin.

Carolina Goncalves, Superintendent Pharmacist at Pharmica, explains: “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.”

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

How is lupus treated?

Unfortunately there is no known cure for Lupus and CAR T-cell therapy is in its very early stages. Because of this, treatment currently focuses on managing symptoms and preventing organ damage.

For now, NSAIDs (Nonsteroidal Anti-Inflammatory Drugs) are a popular choice to reduce inflammation and pain, while anti-malarial medications like hydroxychloroquine are typically prescribed for skin rashes and joint pain, and may reduce the frequency of flare-ups.

Corticosteroids like prednisone are also prescribed to help control inflammation. However, these are generally used at the lowest possible dose to minimise the risk of potential long-term side effects.

People who suffer from moderate to severe lupus are offered immunosuppressive drugs, such as azathioprine and methotrexate, to limit their immune system’s activity.

When and how should you seek help?

If you are struggling with persistent lupus symptoms like unexplained fatigue, joint pain, rashes or low-grade fevers, it is always best to seek help from your doctor. Your GP will evaluate your symptoms and may refer you on to a specialist in autoimmune diseases to conduct further examinations.

If you suspect you may be suffering from lupus, swift action is crucial, because early diagnosis and treatment can help prevent possible complications in major organs. However, severe symptoms, such as chest pain, difficulty breathing or unusual swelling could indicate serious organ involvement – in these instances call 999 immediately.

What else should you know about living with lupus?

As a long-term health condition, lupus demands patients to identify and understand their personal triggers to help manage flare-ups over time. Practising sun protection, managing stress and maintaining a balanced lifestyle can be simple but highly effective ways of limiting aggravating factors and keeping symptoms under control.

Pharmacist Carolina Goncalves explains: “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.”

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