Signs parents may notice
- Tiredness that does not improve with rest
- Fever without a clear cause
- Rash on the cheeks and nose, or rashes made worse by sunlight
- Painless mouth ulcers
- Joint pain or swelling
- Hair loss
- Swelling of the face, eyes or legs, or frothy urine
- Paleness, easy bruising or frequent infections
Tests that may be used
- Complete blood count (CBC)
- ANA and anti-dsDNA antibodies
- Complement levels (C3, C4)
- Urine tests, including urine protein
- Kidney and liver function tests
- Kidney biopsy in some children, to guide treatment
What is childhood lupus?
Systemic lupus erythematosus (SLE), usually called lupus, is an autoimmune condition. The immune system, which normally fights infection, becomes overactive and produces antibodies that cause inflammation in different parts of the body. Lupus can affect the skin, joints, kidneys, blood cells, lungs, heart and brain.
When lupus starts in childhood or adolescence, it is called childhood-onset SLE. It is more common in girls, especially around the teenage years, but it can occur in younger children and in boys too. Lupus often has periods when it is quiet and periods when it flares.
How is lupus diagnosed?
Lupus can look different in every child, so diagnosis depends on putting together the history, examination and test results. A positive ANA test alone does not mean a child has lupus; many healthy children have a low-positive ANA. More specific antibody tests, complement levels, blood counts and urine tests help confirm the diagnosis and show which organs are involved. If the kidneys are affected, a kidney biopsy may be recommended to decide on the best treatment.
How is lupus treated?
Treatment is planned according to which organs are involved and how active the disease is.
- Hydroxychloroquine is recommended for almost all children with lupus. It helps reduce flares and protects organs over the long term. Yearly eye checks are advised while taking it.
- Steroids quickly control inflammation and are then reduced as other medicines start working.
- Immunosuppressive medicines such as mycophenolate, azathioprine or, in some situations, cyclophosphamide are used when organs such as the kidneys are involved.
- Biological therapy such as rituximab may be considered for certain children.
Children with kidney involvement are often cared for jointly with a pediatric nephrologist. Good care also includes attention to growth, bone health, vaccinations, school life and emotional wellbeing.
Living with lupus
Regular follow-up visits, even when your child feels well, are the key to keeping lupus under control. Taking medicines every day as prescribed, protecting the skin from strong sun and reporting new symptoms early all make a difference. Teenagers benefit from gradually learning about their own condition and treatment.
When to see a pediatric rheumatologist
A referral is helpful if your child has a combination of symptoms such as unexplained fever, tiredness, rash, mouth ulcers, joint pain or swelling of the face or legs, or if blood tests show antibodies or low blood counts that need explanation.
Treatment options that may be considered
- Hydroxychloroquine
- Steroids, at the lowest effective dose
- Immunosuppressive medicines such as mycophenolate or azathioprine
- Biological therapy such as rituximab in selected children
- Sun protection
- Bone health, vaccination and growth monitoring
When to seek medical help urgently
- A seizure, confusion, severe headache or sudden change in behaviour
- Breathlessness or chest pain
- Passing much less urine, or new swelling of the face or legs
- High fever while on medicines that lower immunity
- Unusual bleeding or bruising
Questions parents often ask
Is lupus contagious?
No. Lupus cannot be passed from one person to another. It happens because the immune system becomes overactive and mistakenly targets the body's own tissues.
Can lupus be cured?
There is no permanent cure yet, but lupus can be controlled. With regular treatment and follow-up, many children reach a state of low disease activity or remission and are able to attend school and take part in normal activities.
Will my child need steroids for life?
Steroids are often needed at the start to bring lupus under control quickly. The aim is to reduce them to the lowest effective dose, or stop them, as other medicines take effect, to limit side effects on growth, weight and bones.
Why are urine tests done so often?
Lupus can affect the kidneys without causing symptoms at first. Regular urine and blood tests help detect kidney involvement early, when treatment is most effective.
Does my child need to avoid the sun?
Sunlight can trigger rashes and flares in some children. Sunscreen, hats, full-sleeved clothing and avoiding strong midday sun are helpful. Your child does not need to stay indoors.
Related guides for parents
This page is general information and not a substitute for a consultation. Every child is different, and the right treatment depends on an individual assessment. Please do not start, stop or change any medicine without speaking to your child's doctor.