Quick answer
What is lupus?
Systemic lupus erythematosus (SLE) is an autoimmune disease where the immune system attacks healthy tissues — causing joint pain, skin rashes (often butterfly-shaped across cheeks), fatigue, and flares triggered by sun exposure. Diagnosis combines symptoms with blood tests including ANA antibodies. Hydroxychloroquine is cornerstone treatment; flares need specialist management. See a GP if you have persistent joint pain with rash or sun sensitivity.
Lupus — systemic lupus erythematosus (SLE)
Systemic lupus erythematosus (SLE) — commonly lupus — is a chronic autoimmune disease where the immune system produces antibodies that attack the body’s own tissues. It can affect skin, joints, kidneys, brain, heart, lungs, and blood — in unpredictable flares and remissions.
Affects roughly 50,000 people in the UK — women 9 times more than men — often starting 15 to 45 years.
Symptoms — highly variable
Common:
- joint pain and swelling — hands, wrists, knees
- extreme fatigue
- photosensitivity — rash after sun
- butterfly (malar) rash — cheeks and nose
- oral ulcers
- hair loss — non-scarring
- Raynaud’s — fingers white/blue in cold
- fever during flares
- chest pain — pleurisy or pericarditis
Organ involvement (serious):
- lupus nephritis — protein/blood in urine, swollen ankles
- neuropsychiatric lupus — seizures, psychosis, severe headache
- anaemia, low platelets, low white cells
- deep vein thrombosis — antiphospholipid syndrome overlap
No two patients identical — mild skin/joint disease to life-threatening renal crisis.
Diagnosis
No single test. Rheumatology uses 2019 EULAR/ACR criteria combining:
Blood tests:
- ANA — positive in ~98% of SLE but also in other conditions
- anti-dsDNA — more specific; tracks disease activity
- anti-Smith — highly specific but not sensitive
- low complement (C3, C4) during active disease
- FBC, ESR/CRP, urinalysis, creatinine
Biopsy:
- skin — discoid lupus
- kidney — lupus nephritis classification guides treatment
Average time to diagnosis — years historically — improved with awareness.
Triggers and flares
- UV light — primary avoidable trigger
- infections
- stress
- pregnancy and postpartum
- smoking — worsens disease
- medicines — procainamide, hydralazine, isoniazid — drug-induced lupus (usually resolves on stopping)
Treatment
Everyone with SLE (unless contraindicated)
Hydroxychloroquine:
- reduces flares, protects organs, improves survival
- annual eye screening — rare retinopathy
Flares
- NSAIDs — joint pain
- steroids — prednisolone — bridge or severe flare
- immunosuppressants — azathioprine, mycophenolate, methotrexate
- biologics — belimumab, rituximab — specialist
Lupus nephritis
Aggressive immunosuppression — mycophenolate or cyclophosphamide — nephrology-rheumatology joint care.
Antiphospholipid syndrome
Anticoagulation — aspirin or warfarin — prevents clots.
Sun protection — non-negotiable
- SPF 50, reapply
- hat, long sleeves
- avoid midday sun
- UV is a flare trigger even through clouds
Pregnancy and lupus
High-risk pregnancy — specialist care:
- disease must be quiescent before conception
- some medicines teratogenic — plan with rheumatology
- flares can occur postpartum
Many women with mild-moderate SLE have healthy pregnancies.
Lupus vs rheumatoid arthritis
| Lupus | RA | |
|---|---|---|
| Rash, sun, kidneys | Common | Unusual |
| Joint erosions | Less typical early | Classic |
| ANA | Usually positive | Usually negative |
Both need rheumatology — can overlap.
Living with lupus
- Lupus UK — support, benefits advice
- vaccinations — flu, pneumococcal; avoid live vaccines if immunosuppressed
- cardiovascular risk — manage BP, cholesterol, stop smoking
- fatigue management — pacing
Lupus is serious but manageable — modern treatment means most people live full lives; sun protection and hydroxychloroquine are foundations, not afterthoughts.
Common questions
- What are the first signs of lupus?
- Joint pain and swelling, extreme fatigue, butterfly rash on face, photosensitivity (rash after sun), mouth ulcers, hair loss, and fever. Symptoms flare and remit — can mimic other conditions. Diagnosis often takes time — track symptoms for GP.
- Is lupus fatal?
- Most people with lupus live normal or near-normal lifespans with modern treatment. Severe organ involvement (lupus nephritis, brain, severe blood disorders) increases risk — early specialist care improves outcomes. Leading causes of death are infection and cardiovascular disease — manage risk factors.
- What is the butterfly rash in lupus?
- Red or purple rash across cheeks and bridge of nose sparing nasolabial folds — classic but not everyone gets it. UV light triggers or worsens — high SPF, hats, shade essential. Discoid lupus causes scarring skin patches without full systemic disease in some people.
- How is lupus diagnosed?
- Clinical history, examination, blood tests — ANA (often positive), anti-dsDNA, anti-Smith, complement levels, FBC (low WCC/platelets), urinalysis for protein/blood. Skin or kidney biopsy in selected cases. Rheumatology confirms using classification criteria — not one test alone.
- What triggers lupus flares?
- UV sunlight, stress, infections, pregnancy, some medicines (procainamide, hydralazine — drug-induced lupus). Hormonal changes — oestrogen may play a role. Not all flares have clear trigger.
- Can you work with lupus?
- Many people work full time between flares — flexible arrangements help. Fatigue and joint pain are main workplace challenges — occupational health and rheumatology support adjustments.