A woman in a sun hat applying sunscreen to her face in a shaded garden

Lupus (SLE): Tanda, Punca & Rawatan

Lupus (systemic lupus erythematosus, or SLE) is a long-term autoimmune condition in which the immune system attacks healthy parts of the body, causing joint pain, skin rashes and extreme tiredness. A typical sign is a rash across the nose and cheeks (ruam rama-rama, or butterfly rash) that often appears after sun exposure. Lupus mostly affects women, usually between the ages of 15 and 45, and is more common in people of Asian descent. It is not contagious. There is no cure, but symptoms can improve if treatment starts early, and regular check-ups help spot kidney and other organ problems early.

What is penyakit lupus (SLE)?

According to the NHS, lupus is an autoimmune condition: the body's natural defence system (the immune system) attacks healthy parts of the body. The US National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) explains that this attack causes inflammation, and in some cases permanent damage, which can affect the skin, joints, heart, lungs, kidneys, blood cells and brain.

Lupus is not contagious; you cannot catch it from someone else.

The NHS describes lupus as ranging from mild to severe:

Severity How it affects the body
Mild Joint and skin problems, tiredness
Moderate Inflammation of other parts of the skin and body, including the lungs, heart and kidneys
Severe Inflammation causing severe damage to the heart, lungs, brain or kidneys, which can be life-threatening

Who gets lupus?

  • According to NIAMS, anyone can get lupus, but women get it about nine times more often than men.
  • It most often starts between the ages of 15 and 45, but it can also begin in childhood or later in life.
  • The NHS says lupus is more common in women with an African, Caribbean, Asian or Chinese background.
  • NIAMS adds that having a family member with lupus or another autoimmune disease may increase your risk.

Lupus in Malaysia

Malaysian studies give a picture of lupus here:

  • A 2024 cost-of-illness study, whose authors included doctors from Malaysian hospitals, used an estimate of about 18,121 Malaysian patients with lupus. It found a considerable economic burden, largely from lost productivity, as lupus affects adults of working age.
  • At University Malaya Medical Centre, the most common features among lupus patients were a malar (butterfly) rash (61.3%), arthritis (52.3%), blood problems (51.6%), mouth ulcers (51%) and kidney disease (40.6%).
  • At Universiti Kebangsaan Malaysia Medical Centre, 14.1% of 418 lupus patients were men. Men were more likely to have kidney involvement (78.0% versus 63.8%) and organ damage.

Tanda lupus: what are the symptoms?

According to the NHS, there are lots of possible symptoms. The main symptoms are:

  • joint and muscle pain; NIAMS adds that joints may be swollen and stiff in the morning;
  • extreme tiredness that does not go away no matter how much you rest;
  • rashes that usually come on after being in the sun, often over the nose and cheeks.

You might also have:

  • headaches;
  • mouth ulcers; NIAMS notes these are usually painless and most often on the roof of the mouth;
  • a high temperature (demam);
  • hair loss and weight loss;
  • swollen glands, usually in the neck, armpits or groin;
  • depression and anxiety;
  • chest or tummy pain; NIAMS describes pain when breathing deeply or lying down from inflammation of the lining around the lungs or heart;
  • fingers and toes changing colour when you are cold, anxious or stressed (Raynaud's); see our guide to tangan kebas.

Flare-ups: according to the NHS, lupus often flares up, with symptoms getting worse for a few weeks or longer, then settling down (remission). Some people's symptoms stay constant.

Ruam rama-rama: the lupus butterfly rash

The best-known sign of lupus is a rash across the nose and cheeks, called a malar or butterfly rash (ruam rama-rama). According to NIAMS, lupus can also cause round, scaly rashes anywhere on the body, and sensitivity to the sun that may cause a rash.

In Malaysia's hot, sunny climate, sun protection matters. The NHS advises people with lupus to use high-factor sunscreen (at least SPF 50), wear a hat in the sun, and avoid sitting in direct sunlight.

A rash on the face has many causes, so a doctor needs to check it, especially if you also have joint pain or tiredness.

How lupus can affect the kidneys and other organs

According to NIAMS, inflammation from lupus can cause problems in organs, including:

  • kidneys: lupus nephritis can change how the kidneys work and can lead to kidney failure; NIAMS lists swelling in the legs or around the eyes among lupus symptoms (see our guide to sakit buah pinggang);
  • blood: low red blood cells (anaemia), white blood cells and platelets, and blood clots linked to antiphospholipid antibodies;
  • heart and lungs: inflammation of the lining around the heart (pericarditis) or lungs (pleurisy), and a higher risk of heart and blood vessel disease;
  • brain and nerves: headaches, seizures, memory problems or confusion.

This is why, according to the NHS, people with lupus are advised to have regular checks, such as blood tests for anaemia and urine tests for kidney problems.

Punca lupus: what triggers it?

According to the NHS, the causes of lupus are not fully understood. Possible triggers include:

  • a viral infection;
  • certain medicines;
  • sunlight;
  • puberty, childbirth and the menopause.

How is lupus diagnosed?

According to the NHS, lupus is not always easy to diagnose because its symptoms can be similar to other conditions. A doctor will usually arrange blood tests, and may diagnose lupus if the tests show high levels of a certain type of antibody and you also have typical symptoms. You may be referred for X-rays and scans of your heart, kidneys and other organs if they might be affected.

How is lupus treated?

According to the NHS, there is no cure, but treatment can control symptoms. Treatment may include:

  • anti-inflammatory medicines such as ibuprofen;
  • hydroxychloroquine for tiredness and skin and joint problems;
  • steroid tablets, injections and creams for kidney inflammation and rashes;
  • immunosuppressant or biological medicines for severe lupus, to calm or control the immune system.

Keep taking your medicines as prescribed and do not stop them without talking to your doctor. Tell your doctor about any supplements or traditional remedies you take.

Living with lupus: what you can do

According to the NHS, medicines are important, but you can also help manage your symptoms and reduce the risk of lupus getting worse:

  • use sunscreen of at least SPF 50 and wear a hat in the sun;
  • learn to pace yourself to avoid getting too tired, and try to stay active, even on a bad day;
  • try relaxation techniques, as stress can make symptoms worse;
  • tell your employer about your condition, as you might be able to adjust your working pattern;
  • ask for help from family, friends and health professionals;
  • eat a healthy, balanced diet, including vitamin D and calcium;
  • do not smoke, as smoking makes lupus worse;
  • do not sit in direct sunlight or spend a lot of time in rooms with fluorescent lights.

Lupus and pregnancy

According to the NHS, lupus can cause complications in pregnancy, so see a doctor before trying to get pregnant to discuss the risks and check whether your medicines need to change.

A study at Kuala Lumpur Hospital of 131 pregnancies in women with lupus (2008 to 2020) found that 80.9% ended in a live birth, 24.5% of babies were born preterm and 18.3% of women had a flare during pregnancy, mostly mild to moderate. The authors advised that pregnancy is best delayed until lupus has been in remission for at least 6 months.

When should you see a doctor?

According to the NHS, see a doctor (at a klinik kesihatan or a GP) if you often get symptoms of lupus, such as joint pain, extreme tiredness and rashes after sun exposure. Lupus is better managed if it is found and treated early.

If you already have lupus, tell your doctor about new or worsening symptoms, such as swelling in your legs or around your eyes, chest pain when you breathe, or a fever. Call 999 for severe chest pain, severe difficulty breathing or a seizure.

Frequently asked questions (FAQ)

What is penyakit lupus (SLE)?

Lupus, or systemic lupus erythematosus (SLE), is a long-term autoimmune condition, which means the immune system attacks healthy parts of the body. It commonly causes joint and muscle pain, extreme tiredness and skin rashes, and in some people it can affect the kidneys, heart, lungs, blood or brain. Lupus is not contagious.

What are the early signs of lupus?

According to the NHS, the main symptoms are joint and muscle pain, extreme tiredness that does not go away with rest, and rashes that usually appear after being in the sun, often over the nose and cheeks. Other symptoms can include mouth ulcers, fever, hair loss, weight loss, swollen glands, chest or tummy pain, and fingers and toes changing colour in the cold (Raynaud's).

What is the lupus butterfly rash (ruam rama-rama)?

It is a rash across the nose and cheeks, which doctors call a malar or butterfly rash. According to the NHS, lupus rashes usually come on after being in the sun. In a study of lupus patients at University Malaya Medical Centre, a malar rash was the most common feature, seen in 61.3% of patients.

Who is more likely to get lupus?

Lupus is much more common in women; the US National Institute of Arthritis and Musculoskeletal and Skin Diseases says women get it about nine times more often than men, most often between the ages of 15 and 45. The NHS says it is more common in women with an African, Caribbean, Asian or Chinese background.

What causes lupus?

The causes are not fully understood. According to the NHS, possible triggers include viral infections, certain medicines, sunlight, puberty, childbirth and the menopause. Having a family member with lupus or another autoimmune disease may also raise your risk.

Can lupus be cured?

There is no cure, but symptoms can improve if treatment starts early. Treatment may include anti-inflammatory painkillers, hydroxychloroquine, steroids and, for severe lupus, immunosuppressant or biological medicines. According to the NHS, sun protection, pacing yourself, staying active and not smoking also help manage symptoms.

Can women with lupus get pregnant?

Yes, but lupus can cause complications in pregnancy, so the NHS advises seeing a doctor before trying to get pregnant to discuss the risks and check whether your medicines need to change. In a Kuala Lumpur Hospital study of 131 lupus pregnancies, 80.9% ended in a live birth, and the authors advised waiting until lupus has been in remission for at least 6 months before conceiving.

Disclaimer

This article is for general information only and is not a substitute for advice, diagnosis or treatment from a doctor. Lupus can only be diagnosed by a doctor using examination and tests. Health supplements are not intended to diagnose, treat, cure or prevent any disease.

References

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