Lupus

Symptoms of lupus

Lupus symptoms vary enormously from person to person and can affect almost any part of your body. The most common are:

• joint and muscle pain
• extreme tiredness that doesn't ease with rest
• a rash across your nose and cheeks that often appears after time in the sun.

You might also have any of the following:

• headaches, mouth ulcers or a high temperature
• hair loss or unexplained weight loss
• swollen glands in your neck, armpits or groin
• low mood or anxiety
• chest or tummy pain
• pale, purple or blue fingers and toes when you're cold, anxious or stressed (Raynaud's)
• swelling in your legs or around your eyes
• confusion, memory problems or dizziness.

Lupus tends to follow a pattern of flare-ups and calmer periods. During a flare, your symptoms get worse for weeks or sometimes longer, before settling down again (remission). Nobody fully understands why symptoms flare or ease off, and some people find their symptoms stay fairly constant instead.

Causes and risk factors

Doctors don't fully understand what causes lupus, but it's thought to develop from a combination of factors rather than one single trigger. These include your genes, your hormones, and things in your environment such as viral infections, sunlight, certain medicines and smoking.

Genes play a part, but lupus is not straightforwardly passed down from parent to child. Having a close relative with lupus, or another autoimmune condition, simply raises your own risk somewhat.

Lupus is far more common in women, particularly during their childbearing years, and more common in people of Black African, Caribbean, Asian, American Indian or Hispanic and Latino heritage. Hormonal changes, such as those during puberty or later in life around the menopause, have also been linked to lupus, and some people first notice symptoms during or after a pregnancy.

Types of lupus

There are four recognised types of lupus:

• Systemic lupus erythematosus (SLE) is what most people mean when they say ‘lupus’; it's the most common and potentially the most serious type and can affect almost any part of your body.
• Cutaneous lupus affects only your skin, causing rashes or sores, usually triggered by sunlight; discoid lupus and subacute cutaneous lupus are the two main forms.
• Drug-induced lupus is a temporary reaction to certain medicines, usually starting 3 to 6 months after you begin taking them and settling once you stop. Unlike the other types, it isn't a long-term condition.
• Neonatal lupus is rare and affects newborn babies whose mothers have lupus, caused by antibodies passing from mother to baby during pregnancy. It usually clears up within the first 6 to 12 months of life without lasting effects.

How is lupus diagnosed?

Lupus can be difficult to diagnose because its symptoms overlap with many other conditions. Your doctor will ask about your symptoms, your medical history and your family's health history, and carry out a physical examination.

Blood tests are central to diagnosis, particularly a test for a specific type of antibody linked to lupus. Your doctor may also check your complete blood count and levels of certain immune proteins and might arrange a urine test or X-rays and scans of your heart, kidneys or other organs if they think these might be affected.

Occasionally, a small sample of tissue is taken from your skin or kidney (a biopsy) to check for signs that your immune system has caused damage there. If lupus is confirmed, you'll have regular follow-up tests, such as blood tests to check for anaemia and urine tests to monitor your kidneys.

How is lupus treated?

There's no cure for lupus, but a combination of medicines and lifestyle changes can help control your symptoms, reduce flare-ups, and limit damage to your organs over time. You'll likely be cared for by a team that includes your GP and a rheumatologist, along with other specialists if lupus is affecting a particular organ, such as your heart.

Medicines are chosen based on your symptoms and how severe they are. Anti-inflammatory painkillers, such as ibuprofen or aspirin, can ease joint and muscle pain, while hydroxychloroquine, an anti-malarial medicine, often helps with fatigue and skin or joint symptoms. Steroid medicine, whether taken as tablets or applied directly as a cream or injection, can calm inflammation in your kidneys or skin.

For more severe lupus, your doctor may prescribe immunosuppressant or biological medicines, which work by calming or controlling your immune system. Newer medicines that target specific parts of the immune system are also available for some types of lupus, including lupus affecting the kidneys, and researchers are studying treatments such as CAR-T cell therapy for lupus that hasn't responded to other options.

Sun protection matters too: wear a high-factor sunscreen, at least factor 50 and available on prescription, plus a hat, and try to avoid direct sunlight and fluorescent lighting where you can.

Pacing yourself helps as well, since fatigue is one of the hardest parts of lupus to live with. Staying gently active, even on a difficult day, and finding ways to relax can also ease your symptoms, as stress tends to make lupus worse.

A balanced diet that includes enough vitamin D and calcium supports your general health, and stopping smoking is particularly worthwhile, since smoking is known to make lupus worse. It's also worth telling your employer about your condition, since you may be able to adjust your working pattern, and asking for support when you need it.

When should I see a doctor?

See a GP if you keep getting symptoms that could be lupus, especially joint pain, unexplained tiredness or a rash that follows time in the sun. Lupus tends to be easier to manage the earlier it's found and treated.

If you already have lupus, tell your care team promptly about any new symptoms, so your treatment can be adjusted if needed. If you're thinking about becoming pregnant, talk to your doctor first. They can check whether your symptoms are well controlled and monitor you closely, since pregnancy can carry extra risks if lupus is active.