Systemic Lupus (SLE)

Lupus, usually meaning systemic lupus erythematosus (SLE), is a long-term autoimmune disease. The immune system, which normally helps protect the body from infection, can cause inflammation in healthy tissues. Lupus may affect the skin, joints, kidneys, blood and other organs.

Lupus is different for everyone. Some people mainly have skin and joint symptoms. Others develop inflammation in an internal organ and need more intensive treatment. Symptoms can become more active for a time, called a flare, and then settle again.

What happens in lupus?

The immune system produces inflammation that can affect different tissues. The exact cause of lupus is not known. Inherited susceptibility and other factors may contribute, but lupus is not contagious and is not caused by something you did wrong.

Your symptoms and treatment may change over time. The aim of care is to control inflammation, prevent flares and protect your organs while using the lowest amount of treatment needed to do so.

What symptoms can lupus cause?

Symptoms vary widely. You may have only a few of the symptoms below, and not all symptoms will appear at the same time.

Skin, hair and mouth

Lupus may cause:

• A rash on the cheeks and across the nose
• Other rashes that appear or worsen after sun exposure
• Increased hair shedding or areas of hair loss
• Sores inside the mouth or nose

A lupus rash may look different on different skin tones. Tell your clinician about a new or changing rash, and consider showing them a photograph if it comes and goes.

Joints and muscles

Pain and stiffness in the hands, wrists, knees or other joints are common. Some joints may be swollen. Muscle aches can also occur.

Joint pain does not always mean that lupus inflammation is active. An examination helps your clinician decide whether the pain is coming from inflamed joints or another cause.

General symptoms

Lupus can cause marked tiredness and sometimes fever during a flare. Fatigue may also be related to poor sleep, anaemia, medicines, low mood or another health problem. Tell your clinician if fatigue is affecting your daily life so these possibilities can be assessed.

Other organs

Depending on which tissues are affected, lupus can cause chest pain with breathing, shortness of breath, changes in blood counts, or problems involving the kidneys or nervous system. Fingers may become pale or blue in the cold, a change called Raynaud’s phenomenon.

New symptoms should be assessed rather than assumed to be a flare. For example, fever may be caused by an infection, which can need a very different response.

Can lupus affect the kidneys?

Yes. Lupus nephritis means inflammation of the kidneys caused by lupus. The kidneys filter the blood and help control fluid balance and blood pressure.

Lupus nephritis can cause protein or blood to leak into the urine and can affect how well the kidneys work. It may cause no noticeable symptoms at first. This is why urine tests, blood tests and blood pressure checks remain important even when you feel well.

Possible signs include:

• Swelling around the eyes, feet or ankles
• Foamy urine
• Pink, red or dark urine
• New or worsening high blood pressure
• A change in how much you urinate

These signs can have other causes too. Report them promptly so they can be checked.

How is lupus diagnosed?

There is no single test that diagnoses lupus on its own. Your rheumatologist considers your symptoms, examination, blood and urine tests, and how these findings have changed over time.

Tests may include:

• Blood counts to check red cells, white cells and platelets
• Kidney function tests
• Urine tests to look for blood or protein
• Antinuclear antibodies (ANA) and other antibodies, such as anti-dsDNA
• Complement levels, often called C3 and C4
• Other tests based on your symptoms, such as scans or assessment of a rash

A positive ANA does not automatically mean that a person has lupus. Your clinician interprets all test results in the context of your symptoms and examination.

How is lupus nephritis diagnosed?

Your clinician will use urine tests, blood tests and blood pressure measurements to look for kidney involvement. If lupus nephritis is suspected, you may be advised to have a kidney biopsy. During a biopsy, a specialist takes a small sample of kidney tissue for examination.

A biopsy can show the type and degree of kidney inflammation and help guide treatment. Your team will explain why it is recommended, how it is done and its possible risks. Regular urine screening is recommended for people with lupus who do not already have known kidney disease.

Why do I need appointments when I feel well?

Lupus activity is not always obvious from symptoms. In particular, kidney inflammation can develop without pain. Appointments allow your team to review symptoms, examine you, check blood pressure and monitor blood and urine results.

These visits also help your team check whether treatment is working and whether medicines are causing side effects. Do not stop follow-up simply because your symptoms have settled.

How is lupus treated?

Treatment depends on which parts of your body are affected and how active the inflammation is. You may need to see a rheumatologist alongside other specialists, such as a kidney specialist called a nephrologist.

Hydroxychloroquine

Hydroxychloroquine is a foundation of treatment for most people with lupus, unless there is a reason they cannot take it. It helps reduce disease activity and the risk of flares. It does not work immediately, so continue taking it as prescribed while your team assesses its effect.

Your clinician will choose a dose suited to you and advise you about eye checks during long-term treatment. Do not stop hydroxychloroquine because you feel well without discussing it with your team.

Medicines for pain and skin symptoms

Depending on the cause of your symptoms, treatment may include creams for a rash or medicines for joint pain. Non-steroidal anti-inflammatory drugs (NSAIDs) are suitable for some people but can be unsafe when there is kidney disease or certain stomach, heart or bleeding problems. Ask before taking them, including medicines you can buy without a prescription.

Sun protection is an important part of controlling light-sensitive skin symptoms, alongside prescribed treatment.

Steroids

Steroids can bring inflammation under control quickly. They may be given as tablets, injections or, in serious situations, through a vein.

Steroids can also cause side effects, particularly at higher doses or with prolonged use. These include weight gain, high blood pressure, diabetes, infections and weakened bones. Your team will generally aim to reduce the dose as disease control allows. Never stop regular steroid tablets suddenly unless your prescribing team tells you how to do so safely.

Medicines that control immune activity

If lupus remains active or affects an organ, your rheumatologist may prescribe another medicine to control inflammation. The choice depends on the problem being treated and may include azathioprine, mycophenolate, methotrexate or other treatments. Some people may be offered a biologic medicine.

These medicines differ in how they are taken, how they are monitored and whether they are suitable during pregnancy. Your team will explain why a particular medicine is recommended for you. Do not change or stop it without a treatment plan.

How is lupus nephritis treated?

The aim is to control kidney inflammation and preserve kidney function. Treatment usually combines medicines that reduce immune activity with careful monitoring of urine protein, kidney function and blood pressure.

Depending on the type and severity of nephritis, treatment may include steroids alongside medicines such as mycophenolate or cyclophosphamide. For selected patients, other medicines may be added, including belimumab or a calcineurin inhibitor. Your rheumatologist and nephrologist will choose a plan based on your biopsy, test results, other health conditions and treatment preferences.

Some people are also prescribed medicines that help control blood pressure and reduce protein leaking into the urine. These may include an ACE inhibitor or an angiotensin receptor blocker (ARB) when appropriate. These medicines support kidney care but do not replace treatment for active kidney inflammation.

Treatment often continues after test results improve. Your team will monitor for a return of inflammation and advise when it is safe to reduce medicines.

What if kidney function becomes severely reduced?

Modern treatment helps many people protect their kidney function, but severe kidney disease can sometimes progress. If the kidneys can no longer do enough of their work, a kidney specialist will discuss dialysis or kidney transplantation. These are considered when needed; a diagnosis of lupus nephritis does not mean that you will inevitably need them.

What can I do day to day?

Protect yourself from excessive sun exposure

Sunlight can trigger skin symptoms and may contribute to a flare in some people. Use a broad-spectrum sunscreen, wear protective clothing and seek shade when practical. Your clinician can advise you if you are particularly sensitive to sunlight.

Stay active at a manageable level

Regular movement helps maintain strength, fitness and joint mobility. Start with activity you can manage, such as walking or gentle strengthening, and build up gradually. During a flare you may need to adapt your activity, but prolonged inactivity can leave you weaker.

Look after your general health

Avoid smoking and ask for help to stop if you do smoke. Eat a balanced diet and attend checks for blood pressure and other cardiovascular risks. If you have kidney disease, ask your kidney team whether you need specific advice about salt, protein or fluids rather than following a restrictive diet on your own.

Take medicines as agreed

Use a medicine list and bring it to appointments. Tell any clinician treating you that you have lupus and which medicines you take. Check before starting over-the-counter pain medicines, supplements or herbal products, particularly if you have kidney disease.

Ask for support with fatigue and mood

Living with a condition that can flare is demanding. Fatigue, worry and low mood deserve attention. Tell your team how symptoms affect your work, relationships and sleep so you can discuss practical adjustments and treatment where needed.

How can I recognise a flare?

A flare is a period of increased lupus activity. You might notice returning joint swelling, a new rash, mouth sores, fever or a change in how you feel. Sometimes a flare is first detected through blood or urine tests.

Do not increase steroids or other medicines on your own unless your team has given you a specific flare plan. Contact them to discuss new or worsening symptoms. Fever is especially important to report because an infection can resemble a flare.

What if I want to become pregnant?

Many people with lupus have healthy pregnancies. The safest approach is to plan pregnancy with your rheumatologist before trying to conceive. Your team will review disease activity, kidney health, blood pressure, antibody results and medicines.

Pregnancy is generally safer when lupus—especially lupus nephritis—has been well controlled for at least six months. Some lupus medicines can harm a developing baby and must be changed in advance. Others, including hydroxychloroquine in many circumstances, may be continued. The exact plan depends on your condition.

Tell your team if you think you may be pregnant while taking a medicine that may be unsafe in pregnancy. Do not simply stop all treatment: active lupus can also put you and the baby at risk. Your rheumatologist and pregnancy specialist can make a safer plan together.

When should I seek medical help?

Contact your rheumatology team promptly if you have:

• A new rash, swollen joints or other worsening symptoms
• Foamy, pink or dark urine
• New swelling around your eyes or in your legs
• A fever or other signs of infection
• Problems taking treatment or possible medicine side effects
• A positive pregnancy test or plans to become pregnant

Seek urgent medical assessment for severe breathlessness, significant chest pain, confusion, a seizure, severe headache with concerning new symptoms, markedly reduced urine output, or rapidly increasing swelling. Tell the treating team that you have lupus and which medicines you take.

Questions worth asking at your next appointment

• Which parts of my body are affected by lupus?
• What signs or test results show whether my lupus is active?
• How often do I need blood and urine tests?
• Is there any evidence of lupus nephritis?
• What is each medicine for, and what monitoring does it require?
• What should I do if I develop a fever or think I am having a flare?
• Which pain medicines are safe for my kidneys?
• What should I discuss with you before pregnancy?

This information is general. Discuss your diagnosis, medicines and monitoring schedule with your own healthcare team.