Lupus (SLE)

What lupus is

Your immune system normally fights germs. In lupus it also attacks your own tissues. This causes inflammation, which can affect your joints, skin, blood, kidneys, heart, lungs and brain. The full medical name for the main type is systemic lupus erythematosus, or SLE.

Doctors don't fully know what causes it. Your genes play a part, and things such as sunlight, infections, hormones and some medicines may set it off in people who are already at risk. It is not infectious, so you can't catch it or pass it on to others.

Lupus can affect anyone, but it is much more common in women. It usually starts between the ages of 15 and 55, and around 1 in 5 cases begin in childhood. It is more common, and can be more severe, in people of Black African, Black Caribbean and Asian family backgrounds.

Thanks to better treatment, more people are now living with lupus for longer. A UK study found the number of people living with it rose about five times between 1990 and 2020.

Types of lupus

When people say "lupus" they usually mean SLE. There are other forms too.

Symptoms, flares and remission

Lupus is different for everyone. Most people only have some of the possible symptoms. The most common are:

• Extreme tiredness
• Joint and muscle pain
• Stiff or swollen joints
• Rashes, often after sun
• A rash across the cheeks and nose
• Mouth ulcers
• Hair loss
• Fevers
• Brain fog
• Headaches
• Low mood or anxiety
• Fingers or toes changing colour in the cold

Fatigue is reported by nearly 9 in 10 people with lupus. It doesn't go away with rest, and it is often the hardest symptom to explain at work.

Lupus usually comes and goes. Times when it is more active are called flares. Quieter times are called remission. Some people have symptoms most of the time.

1. Days before

   Warning signs

   Many people learn their own early signs, such as more tiredness, aching joints or a low fever. Common triggers include sunlight, infections, stress and too little rest.

2. A few weeks, sometimes longer

   Flare

   Symptoms get worse or new ones appear. Contact your GP or specialist team. Your treatment may need to change for a while.

3. Weeks

   Settling

   As treatment takes effect, symptoms ease. Tiredness can last longer than the other symptoms. Build activity back up slowly.

4. Months or longer

   Remission

   Lupus is quiet, with few or no symptoms. You will usually still need regular check-ups and blood and urine tests.

Timings vary a lot from person to person. They are a rough guide, not rules.

When to get urgent help

Many rheumatology departments have a nurse advice line for people under their care. Keep the number somewhere easy to find.

Diagnosis and referral

Lupus can be hard to diagnose because symptoms come and go and look like other conditions. If you often have symptoms, see your GP. Bring a list of symptoms and photos of any rashes, as they may have faded by the time you are seen.

There is no single test. Doctors look at your symptoms, examine you and use blood and urine tests. These include:

• ANA (antinuclear antibodies): positive in about 95% of people with lupus, but also in about 1 in 10 healthy people. A positive result alone doesn't mean you have lupus.
• Anti-dsDNA antibodies: more specific to lupus, but only about 60% of people with lupus have them.
• Blood counts and complement levels to check for anaemia and how active the lupus is.
• Urine tests to look for signs of kidney involvement.
• Scans, X-rays or a biopsy if an organ such as the kidneys, heart or lungs may be affected.

Your GP will refer you to a rheumatologist, a doctor who specialises in the immune system and joints. If your symptoms are mainly in the skin, you may see a dermatologist. You can't refer yourself.

Treatments and medicines

Treatment aims to calm your immune system, ease symptoms, prevent flares and protect your organs. Your plan will depend on which parts of your body are affected. Most lupus medicines are started by a specialist and then may be prescribed by your GP.

Specialist treatments

If standard treatment isn't controlling your lupus, your specialist may suggest stronger options. These are usually given in hospital clinics.

1. Belimumab (Benlysta)

   Reviewed after 24 weeks

   A biological medicine given by drip in hospital or as an injection under the skin. NICE recommends it as an add-on for adults with active lupus that is still very active despite standard treatment, with positive blood markers. It is only continued after 24 weeks if lupus activity has fallen enough.

2. Rituximab

   Given by drip in hospital

   A biological medicine that targets one type of immune cell. In England it can be used for some adults with severe lupus when other treatments haven't worked, under NHS specialist rules.

3. Treatments for kidney lupus

   Specialist kidney and lupus teams

   Lupus nephritis is treated with stronger immunosuppressants such as mycophenolate or cyclophosphamide. NICE also recommends voclosporin together with mycophenolate for adults with active, more serious lupus nephritis.

4. Pregnancy planning

   Plan ahead with your specialist

   Most women with lupus can have a baby, but planning is important. Some medicines must be stopped first, while others, such as hydroxychloroquine, are usually continued. You may be monitored more closely during pregnancy.

   Pregnancy warning: some lupus medicines, such as methotrexate and mycophenolate, can harm an unborn baby. Talk to your specialist before trying for a baby, and don't stop any medicine without advice.

Self-help and living well

Lupus raises the risk of heart disease. Regular checks of your blood pressure and cholesterol, keeping active and not smoking all help protect your heart.

Tips for getting the best treatment

• Ask your GP for a rheumatology referral if symptoms keep coming back
• Ask for a copy of your blood and urine results
• Ask who to call during a flare, and get the nurse advice line number
• Ask when your next eye check is due if you take hydroxychloroquine
• Ask for a referral to physiotherapy or occupational therapy
• Ask about a pain management programme if pain is hard to control
• Bring someone with you to appointments if brain fog is a problem
• You can ask for a second opinion if you are unhappy with your care

Lupus and work

Lupus can count as a disability under the Equality Act 2010 (the Disability Discrimination Act in Northern Ireland). This applies if it has more than a minor effect on your daily life and has lasted, or is likely to last, at least 12 months. Conditions that come and go, like lupus, can count. The law looks at how you would be without treatment.

If it does, and your employer knows or should know about it, they must make reasonable adjustments. You don't have to tell your employer, but many people find that being open helps. Adjustments might include:

• Flexible hours or a later start
• Working from home on bad days
• Regular rest breaks
• A phased return after a flare or time off
• Time off for appointments and infusions
• A desk away from windows, or blinds and UV film
• An ergonomic chair and a sit-stand desk
• Voice software or a light keyboard for sore hands
• Flexibility on lupus-related absence
• Keeping you away from people with infections where possible

Access to Work is a government grant that can pay for equipment, support and extra travel costs at work. LUPUS UK has free guides for people with lupus and for employers. For advice on your rights, contact Acas or Citizens Advice.

Benefits

If you are too unwell to work, you may get Statutory Sick Pay from your employer. Depending on how lupus affects you, you may also be able to get Personal Independence Payment (PIP), or Adult Disability Payment in Scotland, Universal Credit or Employment and Support Allowance. If you take medicines long term, a prescription prepayment certificate may save you money in England. Turn2us and Citizens Advice can help you check what you can get.

Support and sources

Last reviewed: October 2026.