Lupus is a long-term autoimmune condition that can cause inflammation in different parts of the body.
The immune system normally protects the body from infection. In lupus, it becomes overactive and mistakenly attacks healthy tissues. This may lead to inflammation, pain and, in some cases, damage to organs.
The most common form is systemic lupus erythematosus, often shortened to SLE. The word “systemic” means that the condition can affect several parts of the body, rather than only one area.
Lupus affects each person differently. Some people have relatively mild symptoms, while others may develop more serious organ involvement requiring close monitoring and treatment.
What Are the Symptoms of Lupus?
The symptoms of lupus can vary widely and may change over time.
Common symptoms include:
• Persistent tiredness or low energy
• Painful, stiff or swollen joints
• Skin rashes
• A rash across the cheeks and nose
• Increased sensitivity to sunlight
• Unexplained fever
• Mouth or nose ulcers
• Hair thinning or hair loss
• Chest pain, particularly when taking a deep breath
• Swelling of the feet, legs or around the eyes
• Fingers changing colour in response to cold or stress
• Headaches, difficulty concentrating or other neurological symptoms
Not everyone with lupus will experience all these symptoms.
Symptoms may become worse during periods known as flares and may improve during periods of lower disease activity or remission.
Which Parts of the Body Can Lupus Affect?
Lupus can affect almost any part of the body, including:
• The joints and muscles
• The skin and hair
• The kidneys
• The lungs
• The heart
• The blood and blood vessels
• The nervous system
• The eyes
Many people with lupus mainly experience joint, skin and general symptoms. Others may develop inflammation in important organs, such as the kidneys.
Regular monitoring is important because some forms of organ involvement may not cause noticeable symptoms in their early stages.
What Causes Lupus?
The exact cause of lupus is not fully understood.
It is thought to develop through a combination of genetic, hormonal and environmental factors. Possible triggers may include:
• Exposure to sunlight
• Certain infections
• Hormonal changes
• Smoking
• Some medicines
• Physical or emotional stress
Lupus is not contagious, and it cannot be passed from one person to another through contact.
Who Can Develop Lupus?
Anyone can develop lupus, but it is more common in women, particularly during the childbearing years.
It may affect people from all ethnic backgrounds. However, lupus may be more common and sometimes more severe in people of African, Asian, Hispanic or Indigenous ancestry.
How Is Lupus Diagnosed?
There is no single test that can confirm lupus on its own.
Diagnosis is based on a combination of:
• Your symptoms and medical history
• A physical examination
• Blood tests
• Urine tests
• Imaging or other investigations when required
Blood tests may look for:
• Antinuclear antibodies, known as ANA
• More specific lupus-related antibodies
• Signs of inflammation
• Changes in blood-cell counts
• Complement levels
• Kidney or liver function
• Monitor disease activity • Check for organ involvement • Assess how well treatment is working • Identify medication side effects • Review blood pressure and cardiovascular risk • Detect signs of a flare early • Adjust treatment when needed
How Is Lupus Treated?
There is currently no cure for lupus, but treatment can control inflammation, reduce symptoms and help prevent organ damage.
Treatment depends on which parts of the body are affected and how active or severe the disease is.
It may include:
• Hydroxychloroquine
• Corticosteroids
• Immunosuppressive medicines
• Biological or targeted treatments
• Medication for pain or inflammation
• Treatment for associated problems, such as high blood pressure
• Sun protection and lifestyle measures
Hydroxychloroquine is commonly used in lupus because it can help reduce flares and control joint and skin symptoms. People taking it usually require regular eye examinations.
More intensive treatment may be needed when lupus affects organs such as the kidneys, lungs, heart or nervous system.
Your rheumatologist will discuss the expected benefits, possible side effects and monitoring requirements of each treatment.
Why Are Regular Check-Ups Important?
Lupus may affect the body even when symptoms are mild.
Regular appointments and tests allow your healthcare team to:
• Monitor disease activity
• Check for organ involvement
• Assess how well treatment is working
• Identify medication side effects
• Review blood pressure and cardiovascular risk
• Detect signs of a flare early
• Adjust treatment when needed
You may require regular blood and urine tests even when you are feeling well.
What Is a Lupus Flare?
A flare is a period when lupus becomes more active and symptoms become new or noticeably worse.
Possible signs of a flare include:
• Increased fatigue
• New or worsening joint pain or swelling
• New skin rashes
• Mouth ulcers
• Fever
• Chest pain
• Hair loss
• Swelling of the legs or around the eyes
• Changes in urine
Triggers may include infection, sun exposure, stress or stopping medication.
Not every new symptom is caused by lupus. Infection and medication side effects can sometimes resemble a flare, so it is important to seek medical advice rather than adjusting treatment yourself.
Living Well With Lupus
Many people with lupus are able to lead active and fulfilling lives with appropriate treatment and monitoring.
Helpful measures include:
• Taking medication exactly as prescribed
• Attending regular follow-up appointments
• Completing blood and urine tests as advised
• Using broad-spectrum sunscreen and protective clothing
• Avoiding smoking
• Exercising regularly at a comfortable level
• Eating a balanced diet
• Getting adequate rest and managing fatigue
• Keeping vaccinations up to date after discussing them with your healthcare team
• Seeking medical advice promptly if new symptoms develop
Do not stop lupus medication without speaking to your rheumatologist, even when you feel well. Stopping treatment may increase the risk of a flare.
Lupus and Pregnancy
Many women with lupus can have successful pregnancies, but pregnancy should ideally be planned.
Some lupus medicines are not safe during pregnancy, while others are important to continue. Active lupus, particularly kidney disease, can also increase pregnancy-related risks.
Speak to your rheumatologist before trying to conceive so that your disease activity and medication can be reviewed. Pregnancy care may need to be coordinated between your rheumatologist and an obstetrician experienced in high-risk pregnancy.
When Should You Contact Your Healthcare Team?
Contact your healthcare team if:
• You develop new or worsening symptoms
• You notice swelling of the legs or around the eyes
• Your urine becomes unusually dark, foamy or reduced
• You develop persistent fever or signs of infection
• You experience chest pain or shortness of breath
• You develop severe headache, confusion, weakness or seizures
• You think you may be experiencing a medication side effect
• You are planning a pregnancy or discover that you are pregnant
• You are considering stopping or changing your medication
Seek urgent medical care for severe chest pain, significant breathing difficulty, sudden weakness, confusion, seizures or other rapidly worsening symptoms.
Living With an Unpredictable Condition
Lupus can be difficult because symptoms are not always visible and may change from one day to another.
Learning about your condition, recognising possible flare symptoms and maintaining open communication with your healthcare team can help you feel more confident in managing your health.
Your treatment plan should be individualised according to your symptoms, organ involvement, lifestyle and personal goals.
This information is intended for general education and does not replace an individual medical consultation. Please consult a qualified healthcare professional for advice about your specific symptoms or condition.