Lupus (Systemic Lupus Erythematosus)
Sources consulted
This article is original patient-education content.
- WHO—Health topics A–Z(2024)
- NHS—Health A to Z(2024)
- CDC—Health topics(2024)
Based on international clinical guidelines
Overview
Systemic lupus erythematosus (SLE), often called lupus, is a long-term autoimmune disease. In lupus, your immune system mistakenly attacks healthy tissues, causing inflammation in various parts of the body such as the skin, joints, kidneys, and other organs.
Key facts
- Lupus affects about 9 times more women than men.
- The condition can cause flare-ups (times when symptoms get worse) and remissions (times when symptoms improve).
- Lupus can affect many different parts of the body, including the skin, joints, kidneys, heart, and lungs.
Lupus is not very common, but it is not extremely rare. It affects about 1 in every 1,000 people in the UK.
Lupus most often affects women of childbearing age (15–44), but it can occur in men, children, and older adults of all ethnic backgrounds.
Symptoms
- Chest pain or tightness
- Sudden shortness of breath or trouble breathing
- Confusion, seizures, or stroke-like symptoms (such as weakness on one side of the body)
- Severe abdominal pain
- Very high fever that does not come down
- Signs of a lupus flare affecting the kidneys, such as blood in urine or swelling in the legs
- ⚠New or worsening joint pain or swelling
- ⚠Rash that spreads or becomes painful
- ⚠Fever that continues for more than a few days
- ⚠Unexplained weight loss or night sweats
- ⚠Signs of infection, such as a sore throat or cough
Common symptoms
- Extreme fatigue that does not get better with rest
- Painful or swollen joints, often in the hands, wrists, and knees
- A butterfly-shaped rash across the cheeks and nose
- Fever without an infection
- Hair thinning or hair loss
- Sun sensitivity – rashes or other symptoms after sun exposure
Symptoms in children
- Children with lupus may have more severe organ involvement, especially kidney disease.
- Symptoms can include fever, rash, joint pain, and fatigue, but children often have more widespread inflammation.
Symptoms in older adults
- In older adults, lupus may be milder but can be harder to diagnose because symptoms can overlap with other age-related conditions.
- Older adults may also experience more side effects from medications used to treat lupus.
Causes
Main causes
- The exact cause of lupus is not known, but it is believed to be a combination of genetic, hormonal, and environmental factors.
- In lupus, the immune system becomes overactive and attacks the body's own tissues, leading to inflammation.
Risk factors
- Being female – lupus is much more common in women.
- Age – most people are diagnosed between 15 and 45.
- Family history – having a close relative with lupus or another autoimmune disease increases risk.
- Certain ethnic backgrounds – lupus is more common and often more severe in people of African, Asian, and Hispanic descent.
- Environmental triggers such as sunlight, infections, or certain medications
When to see a doctor
See a doctor urgently if:
- If you have any of the emergency symptoms listed above, call your local emergency number immediately.
Book a routine appointment if:
- If you have persistent joint pain, fatigue, rash, or fevers that do not go away, make an appointment with your GP.
- If you have a family history of lupus and develop symptoms that worry you.
- If you notice new skin rashes, especially after sun exposure.
Diagnosis
There is no single test for lupus. Diagnosis is based on a combination of your symptoms, a physical exam, and blood tests. Your doctor may also refer you to a specialist called a rheumatologist.
Tests that may be done
- Blood tests to check for certain antibodies, such as antinuclear antibody (ANA) and anti-double-stranded DNA (anti-dsDNA).
- Complete blood count (CBC) to check for low red blood cells, white blood cells, or platelets.
- Urine tests to check for kidney problems.
- Chest X-ray or echocardiogram if heart or lung involvement is suspected.
What to expect at your appointment
Diagnosing lupus can take time because symptoms vary and can come and go. Your doctor will want to rule out other conditions first. Be patient and keep a symptom diary to help your doctor.
Treatment
Treatment for lupus aims to reduce inflammation, prevent flare-ups, and manage symptoms. It is a long-term condition that usually requires ongoing care. Treatment is tailored to each person depending on which parts of the body are affected and how severe the disease is.
Self-care at home
- Protect your skin from the sun and avoid UV light – use sunscreen, wear hats, and cover up.
- Get plenty of rest and manage your energy levels – balance activity with rest.
- Reduce stress with relaxation techniques, gentle exercise, or talking to someone you trust.
- Quit smoking and limit alcohol, as these can worsen symptoms.
Medical treatments
Medicines for lupus include anti-inflammatory drugs to reduce swelling and pain, steroids (corticosteroids) for rapid control of severe inflammation, and medicines that suppress the immune system (called immunosuppressants) to help prevent the body from attacking itself. Other treatments may include medicines to prevent or treat specific complications, such as kidney or heart problems. Your doctor will decide the best treatment plan for you based on your individual needs. Do not change or stop any medicine without speaking to your healthcare provider.
When is surgery considered?
Surgery is rarely needed for lupus itself, but it may be required to treat complications such as joint damage or kidney failure. For example, a kidney transplant may be an option for people with severe kidney disease.
Living with this condition
Living with lupus means learning to manage your energy and symptoms. You may need to plan your days to include rest breaks, and avoid triggers that cause flare-ups, such as sun exposure or stress. Keeping a symptom diary can help you identify patterns.
Lifestyle tips
- Exercise regularly, but choose low-impact activities like walking, swimming, or yoga to protect your joints.
- Get enough sleep – aim for 7–9 hours each night.
- Avoid smoking and limit alcohol.
- Protect your skin from the sun every day, even when it is cloudy.
- Eat a healthy, balanced diet rich in fruits, vegetables, and whole grains.
Diet and exercise
There is no special diet for lupus, but eating a balanced diet can help you feel better. Include plenty of fruits and vegetables, lean proteins, and healthy fats. If you have kidney problems, you may need to limit salt, potassium, and phosphorus. Exercise is important for joint health and mood – gentle activities like walking or tai chi can be very helpful.
Mental health and emotional wellbeing
Living with a chronic illness like lupus can be emotionally challenging. You may feel frustrated, anxious, or depressed. It is important to talk about your feelings with your healthcare team, friends, or family. Support groups can also help you connect with others who understand what you are going through.
Prevention
Lupus cannot be prevented because its exact cause is not known. However, you can help reduce the number and severity of flare-ups by avoiding known triggers, such as sun exposure, stress, and infections.
Vaccines
Vaccines are generally recommended for people with lupus to prevent infections like the flu and pneumonia. However, live vaccines (such as the shingles vaccine) may not be safe for people taking certain immunosuppressive medicines. Always check with your doctor before getting any vaccine.
Screening programmes
There is no routine screening test for lupus in the general population. If you have symptoms or a strong family history, your doctor may recommend blood tests to check for autoantibodies.
Complications
If left untreated
- Kidney damage (lupus nephritis) that can lead to kidney failure
- Heart and lung problems, such as inflammation of the lining of the heart (pericarditis) or lungs (pleuritis)
- Blood disorders, including low red blood cells (anaemia), low white blood cells (leukopenia), or low platelets (thrombocytopenia)
- Neurological issues, such as headaches, dizziness, or memory problems
- Increased risk of infections due to the disease itself or its treatments
Long-term outlook
With early diagnosis and proper treatment, most people with lupus can lead full, active lives. Lupus is a chronic condition, but many people experience long periods of remission with few symptoms. Treatments have improved greatly, and research continues to find better ways to manage the disease. Your outlook depends on the severity of your condition and how well you follow your treatment plan. Staying in close contact with your healthcare team and taking care of yourself can make a big difference.
Find support
International organisations
Local organisations
- Lupus UK ↗ · United Kingdom
- Versus Arthritis ↗ · United Kingdom
Helplines
External links open third-party websites. Ruqelo Health is not responsible for external content. Listing an organisation does not imply endorsement.
Always verify with your doctor
Health guidelines vary by country and region. The information in this article is based on international clinical guidelines but may not reflect the specific guidelines, medications, or practices in your country. Always discuss your health concerns with your own doctor or healthcare provider, and refer to your local national health guidelines where available.
Important notice This information is for educational purposes only. It does not replace professional medical advice, diagnosis, or treatment. Always consult a qualified healthcare provider about your specific situation. If you are experiencing a medical emergency, call your local emergency services immediately.