Lupus (SLE)
An autoimmune condition where the immune system attacks the body’s own tissues, most often the joints, skin, blood and kidneys. It comes and goes in flares, looks different in everyone, and is far more treatable than it used to be.
Quick answer: Lupus (systemic lupus erythematosus, SLE) is an autoimmune condition that can affect the joints, skin, kidneys, blood and other organs, usually in flares. It mostly affects women aged 15 to 45. Diagnosis uses symptoms plus blood tests such as ANA. Hydroxychloroquine is recommended for nearly everyone, with other medicines added as needed.
How common. Worldwide, about 44 in 100,000 people, or roughly 1 in 2,300. About 9 in 10 are women, usually diagnosed between 15 and 45. It’s more common and often more severe in Aboriginal and Torres Strait Islander people and in people of Asian, African and Hispanic descent.
Causes. A mix of genes, hormones and triggers. The immune system makes antibodies against the body’s own cells, which cause inflammation. Triggers can include sunlight (UV), infections, and some medicines, which can cause a usually milder ’drug-induced lupus’ that settles when the medicine stops. It isn’t contagious.
Symptoms. Tiredness, joint pain and swelling (usually hands and wrists), a rash across the cheeks and nose (the ’butterfly’ rash) or other rashes made worse by the sun, mouth ulcers, hair loss, fevers, swollen glands, Raynaud’s, chest pain on breathing in (pleurisy), and low blood counts. Kidney inflammation (lupus nephritis), which affects up to about 4 in 10 people, often causes no symptoms at first and is found on urine tests. Less often it affects the brain, heart or lungs.
How it’s diagnosed. From symptoms, examination and tests, usually by a rheumatologist. The 2019 EULAR/ACR classification criteria require a positive antinuclear antibody (ANA) test at 1:80 or more, then add weighted points for features such as rash, joint involvement, kidney findings and specific antibodies (anti-double-stranded DNA, anti-Smith), and low complement levels. A positive ANA alone is NOT lupus: about 1 in 7 healthy people have a low positive result. Urine and blood pressure checks look for kidney involvement.
Treatment
The goal is remission or low disease activity with the least steroid possible (EULAR 2023 recommendations).
- Everyone · Self-careSun protection and healthy habitsDaily broad-spectrum SPF 50+ sunscreen, hats and covering up; not smoking; regular exercise; vaccinations.
- Works
- Sun protection reduces skin flares; smoking makes lupus and hydroxychloroquine response worse
- Access
- Low cost
- Watch for
- Low vitamin D is common with sun avoidance; ask about testing.
- Everyone · PrescriptionHydroxychloroquineAn antimalarial medicine recommended for nearly everyone with lupus, long term.
- Works
- Reduces flares (in a classic trial, stopping it made flares about 2.5 times more likely), protects organs and improves survival
- Access
- PBS-subsidised
- Watch for
- Usually well tolerated. Rarely affects the retina after years: eye checks at the start and yearly after 5 years.
- Flares · PrescriptionCorticosteroids (prednisolone)For flares, at the lowest dose and shortest time needed, aiming for 5 mg a day or less, or stopping.
- Works
- Rapidly controls inflammation
- Access
- PBS-subsidised
- Watch for
- Long-term use causes bone thinning, weight gain, diabetes and infection, which is why steroid-sparing medicines are added.
- Steroid-sparing · SpecialistMethotrexate, azathioprine or mycophenolateAdded when hydroxychloroquine isn’t enough or steroids can’t be lowered. Mycophenolate is a mainstay for lupus nephritis.
- Works
- Allow lower steroid doses and control organ disease
- Access
- Specialist-guided
- Watch for
- Regular blood tests. Methotrexate and mycophenolate must be avoided in pregnancy.
- Biologics · SpecialistBelimumab or anifrolumabInfusions or injections for active lupus despite standard treatment; belimumab also for lupus nephritis.
- Works
- In trials, more people reached response and had fewer severe flares than with standard care alone
- Access
- Specialist only; access varies by country
- Watch for
- Infections; infusion reactions.
Save your money
Popular, heavily marketed or often asked about, but the evidence is weak or says no.
- ’Cure lupus naturally’ protocols and anti-inflammatory diets sold onlineNo diet or supplement has been shown to control lupus. A balanced diet is good for heart and bone health, which matter in lupus.
- Echinacea and other ’immune boosters’Boosting the immune system is the opposite of what lupus needs, and some may trigger flares.
Living with it
- Keep taking hydroxychloroquine even when you feel well; it prevents flares.
- Plan pregnancy with your rheumatologist; lupus should be quiet for about 6 months first, and some medicines must be changed.
- Heart disease risk is higher: check blood pressure, cholesterol and sugar regularly.
- Pace yourself; fatigue is common even when lupus is controlled.
- Have regular urine and blood tests, even without symptoms.
See your GP if
- You have joint pain and swelling with rashes, mouth ulcers, hair loss or fevers
- A rash appears on your face or other sun-exposed skin after being in the sun
- You’ve been told you have a positive ANA and aren’t sure what it means
- You have lupus and notice swollen ankles, frothy urine or a new rash
Get urgent help for chest pain, severe breathlessness, a seizure, confusion, a severe headache, signs of stroke, coughing blood, or a high fever if you’re on immune-suppressing treatment: call 000 (Australia) or your local emergency number.
Outlook. Much better than in the past: more than 9 in 10 people with lupus are alive 10 years after diagnosis, and many live a normal life span. Kidney involvement, infections and heart disease are the main risks, so check-ups matter. World Lupus Day is on 10 May: see our health days calendar.
Common questions
What are the first signs of lupus?
Often tiredness, joint pain and swelling, rashes (especially after sun exposure), mouth ulcers, hair loss and fevers. Symptoms can come and go, which makes it hard to spot early.
What does a lupus rash look like?
Classically a red ’butterfly’ rash across the cheeks and bridge of the nose, sparing the creases beside the nose. Other lupus rashes include scaly, round patches on sun-exposed skin.
Does a positive ANA mean I have lupus?
No. About 1 in 7 healthy people have a low positive ANA. Nearly everyone with lupus has a positive ANA, so a negative test makes lupus unlikely, but a positive one needs the full picture.
Is lupus fatal?
Rarely now. More than 9 in 10 people are alive 10 years after diagnosis. Serious kidney involvement, infections and heart disease are the main risks.
What triggers a lupus flare?
Sunlight, infections, stress, tiredness, stopping medicines (especially hydroxychloroquine), pregnancy and some medicines.
Can you get pregnant with lupus?
Yes, most women with lupus can have healthy pregnancies with planning. Aim for quiet disease for about 6 months first and review medicines with your rheumatologist.
What is the main treatment for lupus?
Hydroxychloroquine, recommended for nearly everyone, plus sun protection. Steroids, immune-suppressing medicines and biologics are added depending on which organs are involved.
Evidence and more information
- Fanouriakis et al, EULAR 2023: Recommendations for the management of systemic lupus erythematosus
- Aringer et al, 2019 EULAR/ACR classification criteria for systemic lupus erythematosus
- Tian et al, Ann Rheum Dis 2023: Global epidemiology of systemic lupus erythematosus
- healthdirect: Lupus
- NHS: Lupus
maladywise.com/lupus/