Lupus

Also called SLE, Systemic lupus erythematosus

The immune system attacking the body's own tissues, almost anywhere. Called the great imitator for good reason.

What it is

Lupus is an autoimmune condition in which the immune system attacks healthy tissue: skin, joints, kidneys, blood, heart, lungs, brain. Any of them, in any combination.

Around 69,000 people in the UK have it. It affects nine times as many women as men, and it disproportionately affects Black, Asian and other minority ethnic groups, in whom it also tends to be more severe.

It is called the great imitator because it looks like everything else. The average time to diagnosis runs to years, and people are commonly told it is stress, depression, or fibromyalgia.

Kidney involvement, lupus nephritis, is silent and is what most affects long-term outcome. That is why urine tests matter.

Signs you might notice

Extreme fatigue that is not proportionate to activity.

Joint pain and swelling, often in hands and wrists.

A butterfly-shaped rash across the cheeks and nose, though many people never get it.

Photosensitivity: rashes or feeling unwell after sun exposure.

Mouth ulcers, hair loss, Raynaud's.

Fever without infection, chest pain on breathing, swollen ankles, and cognitive fog.

How it can affect day-to-day life

The invisibility problem is acute. People look well and feel dreadful, and their symptoms fluctuate, which makes employment and benefits assessments difficult.

Sun exposure genuinely triggers flares, including through windows and from fluorescent lighting, and factor 50 all year is standard advice that sounds excessive until you have had a flare.

Hydroxychloroquine is the backbone of treatment and reduces flares, damage and mortality. People stop it because it seems to do nothing day to day, which is precisely how it works.

Supporting someone well

Keep taking hydroxychloroquine, including in remission. Stopping it is a leading cause of flares.

Use high-factor sun protection all year, and cover up.

Attend the monitoring blood and urine tests. Urine protein is how kidney involvement is caught before symptoms.

Pace activity, and treat fatigue as a symptom to be planned around.

Treat infections promptly on immunosuppressive treatment, and keep vaccinations current.

Ask for referral to a specialist lupus centre if the disease is difficult.

Where to get help

A rheumatologist manages lupus. Ask for referral if a GP suspects it.

LUPUS UK provide support and their material for GPs is worth taking to appointments.

Chest pain, breathlessness, seizures, severe headache or swollen legs need urgent assessment.