- Dr Richard Campbell, Consultant Rheumatologist
Lupus (systemic lupus erythematosus, SLE), is a long-term condition that causes symptoms such as pain in your joints, extreme tiredness, and skin rashes. Symptoms vary between people and may come and go over time. While there's no cure, there are treatments that can keep SLE under control to improve your symptoms, particularly if you start treatment early.
About lupus
Lupus is an autoimmune condition. This means it’s caused by your immune system reacting against your body tissues. Lupus causes inflammation in various parts of your body. This is why there are so many different potential symptoms and parts of your body that can be involved. This includes your joints and skin as well as your kidneys and lungs.
Lupus can be mild or severe, and can be long-lasting (chronic). You can get lupus at any age but it’s most common in women aged between 15 and 55. Lupus is also more common and severe in people of Black African, Caribbean, and Asian origin.
Most people with lupus lead active, normal lives and have symptoms that are mild or moderate. While you may have long-term joint and skin symptoms, treatments can help with these. But for some people, lupus is severe and can even be life-threatening.
There are different types of lupus but the most common is systemic lupus erythematosus, which this topic will focus on. For simplicity, we will refer to this as ‘lupus’ throughout.
Causes of lupus
The exact cause of lupus, and why your immune system attacks healthy cells, isn’t fully understood yet. It may be linked to your genes. Something in the environment – for example, an infection with a virus – may trigger the condition if you’re already genetically susceptible to lupus.
Other things that are known to trigger lupus include:
- smoking
- sunlight
- pregnancy
- your body having too low a level of vitamin D
Hormones (chemical messengers in the body) may play a role too.
Symptoms of lupus
Lupus symptoms can vary widely between people depending on which part of your body it affects. And they can range from being mild to very severe. The main symptoms of lupus are:
- extreme tiredness
- joint and muscle pain, which may lead to muscle weakness
- feeling generally unwell
- a high temperature
- skin rashes – this may be a painful and itchy rash on your nose and cheeks, or raised patches of scaly skin, for example
- weight loss
Other symptoms may include:
- headaches
- mouth or nose ulcers
- swollen glands, usually in the neck, armpits, or groin
- sensitivity to light – your skin may develop a rash if exposed to the sun
- thinning hair
- chest pain
Lupus can also cause you to develop Raynaud's phenomenon. This is where your blood stops flowing properly to your fingers and toes when you’re cold.
Your lupus symptoms may flare up and become worse for a while before they settle down. This may keep happening. During a lupus flare, your usual symptoms may get worse, which can cause damage in your body. Lupus treatments can help to prevent flares. It’s important to talk to your doctor when you have a flare so you can create a plan together to manage them. You may need to change or increase your treatment.
If you have severe lupus, it can affect your organs, such as your heart, lung, brain or kidneys. This can be much more serious and potentially life-threatening. See our section on complications of lupus for more information.
You’ll have regular reviews with your doctor to check for signs of any serious problems, and talk about how you’re managing with lupus.Diagnosis of lupus
Your GP will ask about your symptoms and medical history and examine you. If your GP thinks you could have lupus, they’ll refer you to see a rheumatologist – a doctor who specialises in identifying and treating inflammatory conditions.
There isn’t a single test to diagnose lupus. But blood tests can check for antibodies that are often found in people with lupus. If you have certain lupus symptoms, blood tests can show how active the lupus is, as well as check for problems with your organs, for example your kidneys.
You may need other tests to check your organs. For example, you may need a pee (urine) test to check for any kidney problems. Or you may have a CT scan to check your heart.
Self-help for lupus
There are some things you can do to help manage your symptoms, which include the following.
- Take over-the-counter painkillers if you have any joint and muscle pains or a headache. But check with your doctor which to take because some patients with lupus cannot take ibuprofen, for example.
- Eat a healthy diet, which includes vitamin D (you may need to take supplements).
- Try to keep to a healthy weight.
- Use sunscreen (at least factor 30) and cover up in the sun with suitable clothing, including a wide-brimmed hat. Try to stay in the shade when you’re out and don’t sit in the sun.
- Keep active and exercise regularly, but don’t over-do it. Pace yourself with activities if you need to, so you don’t get too tired.
- If you feel stressed, try some relaxation techniques to manage the stress.
- Get plenty of sleep.
- Don’t smoke because it will make your lupus symptoms worse.
- Have a flu vaccine each year – make sure to tell the health professional you book with that you have lupus.
- Talking therapies may help you to cope with living with SLE.
If you work, it’s important to tell your employer that you have lupus so they can help you make any necessary adjustments.
Treatment of lupus
There's no cure for lupus, but there are treatments that aim to prevent damage to your organs and keep your symptoms under control. Exactly what treatment you need will depend on which parts of your body lupus affects, and how severe it is. Lupus treatments include the following.
- Non-steroidal anti-inflammatory drugs (NSAIDs) such as naproxen may help with joint and muscle pain. Check with your doctor which NSAID to take because some patients with lupus cannot take ibuprofen, for example.
- Steroid tablets, injections, and creams can reduce inflammation.
- Hydroxychloroquine is given to most people with lupus. It may help with any tiredness and skin and joint problems.
- Immunosuppressant medications such as mycophenolate mofetil, azathioprine, and methotrexate help stop your immune system from attacking healthy tissue.
If you have severe lupus or the treatments above don’t help you, your doctor may prescribe one of the immunosuppressant medicines for you. Or they may prescribe a type of chemotherapy (for example, cyclophosphamide) or biological medicines (for example, rituximab). These help to calm or control your body's immune system.
Complications of lupus
Complications of lupus include:
- severe inflammation of your kidneys, which can lead to kidney damage
- inflammation of your heart (pericarditis) and lungs (pleuritis)
- fatty substances in your blood building up inside your coronary artery walls (atherosclerosis), which increases your risk of coronary artery disease
- blood clots
- problems with your brain and nervous system
- depression and anxiety
- pregnancy-related complications
If you take any medicines your doctor prescribes for you, it will give you the best chance to keep your lupus under control and avoid these complications. You’ll have regular reviews with your doctor to check for signs of any complications. Your doctor can adjust your treatment or refer you to appropriate specialists, depending on where your body is affected, to get the support you need.
Contraception and pregnancy
Some types of the pill (oral contraceptive) can make lupus worse but you may be able to take other types if your lupus symptoms are stable. Ask your doctor for advice.
Most people with lupus don’t have any problems having a baby. But if you want to have a baby, it’s important to talk to your doctor early so you can put plans in place. You’ll need to get your lupus under control first, and to be taking medicines that won’t harm your baby. If you have severe lupus, you may need to delay trying for a baby until it’s under better control because there can be complications.
There are four main types of lupus. Systemic lupus erythematosus (SLE) is the most common. Other types of lupus include:
- Cutaneous lupus erythematosus (CLE), which affects your skin.
- Drug-induced lupus erythematosus, which can be triggered by taking certain medicines, such as those used to treat high blood pressure.
- Neonatal erythematosus, which can happen when antibodies are passed from the parent to the baby in the womb.
The most common first signs or symptoms of lupus are joint and muscle aches and pains, and extreme tiredness. You may get skin rashes too. But lupus symptoms can vary widely depending on which part of your body it affects. Lupus can affect various organs, such as your skin, heart, lungs, kidneys, and your digestive, blood, reproductive, and nervous systems.
See our sections on symptoms of lupus and complications of lupus for more information.
The exact cause of lupus, and why your immune system attacks healthy cells, isn’t known but it may be genetic. It’s possible that something in your environment may trigger lupus in you if you’re already susceptible to lupus.
See our section on causes of lupus for more information.
The effect lupus has on your life can vary – you may have severe symptoms or it may be mild and barely affect you. There are some things you can do to help yourself manage lupus. Eat a healthy diet, which includes vitamin D, and keep to a healthy weight. It’s important to exercise regularly but pace yourself with activities so you don’t get too tired. And take your medicines regularly and have regular health check-ups with your specialist.
See our section on self-help for lupus for more information.
Other helpful websites
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- Rachael Mayfield-Blake, Freelance Health Editor