Systemic lupus erythematosus (SLE)
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- Hydroxychloroquine is the foundation medicine for lupus and is recommended for almost everyone, usually for the long term.
- Steroids work quickly, but the aim is the lowest dose for the shortest time, tapering to a low dose or off.
- The aim of treatment is a quiet, low-activity state, checked at every visit.
- Lupus can affect the kidneys, so urine and blood are checked regularly even when you feel well.
- Good lupus care also protects your heart, bones, and mental health, and plans ahead for pregnancy.
Understanding this condition
What it is
Lupus is a long-term autoimmune disease. In autoimmune disease the immune system, which is meant to protect you, attacks your own healthy tissue by mistake. In lupus this can cause inflammation in many parts of the body at once, such as the skin, joints, kidneys, blood cells, and sometimes the heart, lungs, or brain. It is called systemic because it can affect the whole body.
Symptoms
Lupus looks different from person to person. Common symptoms include tiredness that does not go away, joint pain and swelling, skin rashes (including a rash across the cheeks and nose, and rashes that appear after sun exposure), mouth ulcers, hair loss, and fevers. Some people have chest pain when breathing, or fingers that change colour in the cold. Many people also have symptoms like deep fatigue and brain fog that are harder to measure but still matter.
Who gets it
Lupus is most common in women during their childbearing years, though anyone can develop it, including children and men. It is more common, and can be more serious, in Black, Hispanic, Indigenous, and Asian people. About 73 in every 100,000 people in the United States are living with lupus. Genes, hormones, and things in the environment all seem to play a part in who develops it.
How it is diagnosed
There is no single test for lupus. A rheumatologist puts together your symptoms, a physical examination, blood and urine tests, and antibody tests (such as the ANA test) to reach the diagnosis, and to rule out other causes. Researchers also use agreed classification checklists to keep studies consistent, but a diagnosis is your doctor's judgment about your whole picture, not just one test result.
What to expect over time
Lupus is a long-term condition, but the outlook has improved a great deal. Most people, with the right treatment, can reach a quiet state where the disease is calm. The main long-term goals are to prevent flares, protect the kidneys and other organs, and avoid harm from treatment, especially long-term steroids. Kidney involvement and heart-related risks are the most important things your team watches for over the years.
Living with and treating it
Goals of treatment
The goals are to calm the disease down to a quiet state (called remission) or a low-activity state, to prevent flares and organ damage, and to keep the amount of medicine, especially steroids, as low as possible. Your goals may shift over time depending on how active the disease is and what stage of life you are in, and they are decided together with your team.
Treatment options
Almost everyone with lupus takes hydroxychloroquine, which calms the disease and protects organs. Steroids are used to get flares under control quickly, but the plan is to lower them as soon as possible. To keep the disease quiet and reduce the need for steroids, doctors add other medicines that calm the immune system, such as methotrexate, mycophenolate, or azathioprine, and newer biologic medicines such as belimumab or anifrolumab. For severe organ-threatening disease, stronger medicines such as cyclophosphamide or rituximab may be used. The exact choice depends on which organs are affected and on your preferences.
Tests and monitoring
Lupus is followed with regular check-ins that measure how active the disease is and check your organs. You will have blood and urine tests, including urine checks for the kidneys at least once or twice a year, even when you feel well. Once a year your team also checks for any lasting damage. If you take hydroxychloroquine, you will have an eye check at the start and then regular eye checks to protect your vision.
Flares
A flare is when lupus becomes more active again, with symptoms getting worse or new symptoms appearing. Flares can be mild or serious. Treatment is stepped up to bring the flare under control, then eased back down once the disease is quiet again. Tell your team early if you notice new or worsening symptoms, so a flare can be caught and treated before it causes harm.
Living well
Everyday steps make a real difference in lupus. Protecting your skin from the sun (sunscreen and covering up) helps prevent rashes and flares. Not smoking, staying active, keeping up with vaccinations, and looking after your bones, heart, and mental health are all important. If you are thinking about pregnancy, plan ahead with your team, because timing and medicine choices matter.
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Lupus and its treatments raise the risk of some other problems, so your team screens for and helps manage them. These include infections (checked for before some treatments, and helped by vaccines), heart and blood-vessel disease, thinning bones, and certain cancers (including regular cervical screening). Some people with lupus also carry antibodies that raise the risk of blood clots, which your team will test for. Mood and anxiety are common too and deserve attention.
What to expect at your appointment
At a lupus appointment your rheumatologist will ask about your symptoms and how you are feeling day to day, examine you, and order blood and urine tests. Together you will talk through your goals, the pros and cons of each treatment (including side effects and costs), and agree on a plan and a follow-up schedule. It helps to bring your questions and to say what matters most to you, because good lupus care is a partnership. You can ask for the most important issue to be dealt with first if time is short.
The aim is to bring lupus to a quiet state, either remission (the disease is calm) or low activity, and to keep it there, checked at every visit. Getting there usually means staying on hydroxychloroquine, using the lowest possible amount of steroid, and adding other medicines when needed. Your target may change over time and is set together with your team.
How treatment is stepped up
- 1
Foundation for everyone
Almost everyone with lupus takes hydroxychloroquine, which calms the disease, helps prevent flares, and protects organs, alongside sun protection and healthy-living steps. This is the base that the rest of treatment is built on.
- 2
Control the flare, then lower the steroid
When lupus is active, steroids are used to get it under control quickly. The plan is always to use the smallest amount for the shortest time and to lower it, aiming for a low dose or none, usually within about six months. For severe flares, a short course of high-dose steroid may be given into a vein.
- 3
Add steroid-sparing therapy for ongoing activity
To keep lupus quiet and reduce the need for steroids, doctors add a medicine that calms the immune system, such as methotrexate, mycophenolate, or azathioprine, and/or a newer biologic medicine such as belimumab or anifrolumab. The choice depends on which organs are involved and on what matters to you. There is no single right order.
- 4
Severe or refractory organ disease
If lupus is threatening an organ or is not responding to earlier treatments, stronger medicines are used. Cyclophosphamide may be given for organ- or life-threatening disease, and rituximab may be used when the disease keeps coming back despite treatment. In the most severe situations, treatments that clean the blood (plasma exchange) or boost it (IVIG) may be added.
Medication guides
Plain-language guides to the medicines used for this condition. Each has a patient and a clinician view.
- Hydroxychloroquine
- Glucocorticoids
- Methotrexate
- Mycophenolate
- Azathioprine
- Belimumab
- Anifrolumab
- Cyclophosphamide
- Rituximab
The numbers, in plain terms
about 50 in 100
About half of people with lupus develop inflammation in the kidneys (called lupus nephritis) at some point, which is why the kidneys are checked regularly.
up to 95 in 100
Up to 95 in 100 people with lupus have joint symptoms such as pain or swelling at some point in the disease.
Living well, beyond the diagnosis
The whole-person side of living with a rheumatic disease, the parts patients tell us matter most. These guides apply across conditions.
When to get medical help
- A fever, chills, or feeling very unwell while taking medicines that lower the immune system. Infections can become serious quickly and need prompt care.
- A severe headache, confusion, a seizure, weakness, or trouble speaking or seeing. These can be signs of lupus affecting the brain or a stroke and need emergency assessment.
- Chest pain, a fast or irregular heartbeat, or new shortness of breath, which can point to inflammation around the heart or lungs, or a blood clot.
- Foamy urine, blood in the urine, or new swelling of the legs, feet, or face, which can be a sign of kidney involvement.
- Sudden swelling, pain, or warmth in one leg, or a swollen painful calf, which can be a blood clot, especially if you carry antiphospholipid antibodies.
- If you are pregnant or planning pregnancy, contact your team early, because timing and medicine choices matter and some lupus medicines are not safe in pregnancy.