Lupus: symptoms, diagnosis, treatment and living with it

The NHS says there are lots of possible symptoms. NHS inform says the three main symptoms of SLE are fatigue, joint pain and rashes, and Lupus UK adds that the two most common are joint and muscle aches and extreme fatigue, with almost 9 out of 10 people with lupus reporting fatigue.

Lupus UK stresses that symptoms can come and go and change over time, and that it is rare for two people to share the exact same experience.

Lupus UK explains that in lupus the immune system gets confused and starts attacking healthy parts of the body instead of germs. It makes autoantibodies that can form clumps called immune complexes, which can build up in organs such as the skin, joints or kidneys and cause swelling, pain and damage. It is sometimes called "the great imitator" because it can mimic other illnesses.

Lupus UK lists systemic lupus erythematosus (SLE), cutaneous lupus that mainly or only affects the skin, neonatal lupus (rare, in babies, and generally resolving in 6 to 12 months) and drug-induced lupus, a temporary reaction to specific medicines. NHS inform names discoid lupus and subacute cutaneous lupus as skin-only forms.

The NHS says lupus is not always easy to diagnose because symptoms can be similar to other conditions. A GP will usually do some blood tests and may diagnose lupus if tests show high levels of a certain type of antibody and you have typical symptoms. You might be referred for X-rays and scans of the heart, kidneys and other organs if the doctor thinks they might be affected.

If lupus is confirmed, the NHS says you will be advised to have regular checks and tests, such as blood tests to check for anaemia and urine tests to check for kidney problems. Lupus UK says it is usually diagnosed by a rheumatologist, who you see through a GP referral. It also notes that joint pain, fatigue and hair loss occur in conditions such as thyroid disease, rheumatoid arthritis and fibromyalgia, which can make lupus harder to diagnose.

The NHS says there is no cure, but symptoms can improve if treatment starts early, and that lupus is better managed if found and treated early. NHS inform says medicines can relieve many symptoms and reduce the chances of organ damage.

The NHS says that although medicines are important, you can help manage symptoms and reduce the risk of lupus getting worse.

• use high-factor (at least factor 50) sunscreen and wear a hat in the sun; sunscreen can be prescribed if you have lupus

• learn to pace yourself to avoid getting too tired, and try to stay active, even on a bad day

• try relaxation techniques, because stress can make symptoms worse

• eat a healthy, balanced diet, including vitamin D and calcium

• do not smoke, as smoking makes lupus worse

• do not sit in direct sunlight or spend a lot of time in rooms with fluorescent lights

• tell your employer, who may be able to adjust your working pattern

The NHS says the causes are not fully understood. Possible causes include viral infection, certain medicines, sunlight, puberty, childbirth and menopause. Lupus UK says genes, hormones and infections including viruses may play a role, and that it is not necessarily passed from parents to children, although people with a family history may be at higher risk. There is no genetic test for lupus.

The NHS says lupus can range from mild to severe.

The NHS says lupus can cause complications in pregnancy and advises seeing a doctor before trying to get pregnant, so they can discuss the risks and check whether your medicines need to be changed.

Lupus UK notes that an increased risk of miscarriage is a complication of lupus, but that with close monitoring many people with lupus now have successful pregnancies.

Lupus UK says around 2 in 10 cases of lupus start in childhood, which is known as childhood-onset lupus or juvenile SLE. It also lists puberty, after childbirth and menopause as life stages when lupus can develop or flare.

The NHS advises seeing a GP if you often get symptoms of lupus, because it is better managed if found and treated early. NHS inform says to see your GP if you have persistent or troublesome symptoms that you think could be caused by SLE, though it is likely they have a more common cause.

On the NHS, lupus is usually diagnosed after a GP referral to a rheumatologist, with long-term monitoring of blood and urine tests for anaemia and kidney problems. Private rheumatology consultations and blood tests are available for people who choose to pay or have insurance, but lupus is a long-term condition, so ask how monitoring and prescribing of medicines such as hydroxychloroquine will be shared with your GP.