Sarcoidosis

An immune condition where tiny clumps of inflammatory cells, called granulomas, build up in organs, most often the lungs and the lymph glands in the chest. Many people need no treatment and it settles on its own.

Quick answer: Sarcoidosis causes tiny clumps of inflammation (granulomas) in organs, usually the lungs and chest lymph glands, sometimes the skin, eyes or heart. Many people have mild symptoms or none, and about two in three improve on their own within a few years. Treatment, usually prednisolone, is for troublesome symptoms or organs at risk.

How common. Rates vary a lot around the world, from roughly 1 to 50 people in 100,000, highest in Scandinavia and among African American women. It usually starts between 20 and 60 and is slightly more common in women. It isn’t contagious and isn’t cancer.

Causes. Unknown. The leading idea is that in people with certain genes, the immune system overreacts to something breathed in, such as dust, mould, chemicals or bacteria, and keeps building granulomas instead of switching off.

Symptoms. About 9 in 10 people have lung or chest gland involvement: a dry cough, breathlessness or chest discomfort, though some have no symptoms and it’s found on a chest X-ray. Tiredness, fever, night sweats and weight loss are common. It can also cause red, tender lumps on the shins (erythema nodosum), other skin rashes, red or painful eyes and blurred vision, swollen glands, joint pain, and less often heart rhythm problems, nerve symptoms or kidney stones.

Löfgren syndrome. A sudden form with erythema nodosum, swollen glands in the chest on X-ray, fever and painful, swollen ankles. It has the best outlook: more than 8 in 10 people recover within 2 years, often without steroids.

How it’s diagnosed. There’s no single test. Per the American Thoracic Society 2020 guideline, diagnosis rests on three things: a fitting clinical picture, a biopsy showing non-caseating granulomas (often taken from chest glands with an ultrasound-guided bronchoscopy), and ruling out other causes such as tuberculosis, fungal infection, lymphoma and reactions to dust or drugs. Löfgren syndrome can be diagnosed without a biopsy. Tests also include a chest X-ray or CT (staged with the Scadding system), lung function tests, blood calcium (sarcoidosis can cause high calcium), kidney and liver tests, an ECG, and an eye check. The ACE blood test isn’t reliable enough to diagnose or rule it out.

Treatment

Treatment is for troublesome symptoms or organs at risk, not for the scan alone. Many people only need monitoring.

1. Step 1 · Watch and waitMonitoringRegular check-ups with lung function tests and X-rays. Anti-inflammatory painkillers for joint pain and erythema nodosum.

   Works

   Most people with mild disease improve without treatment

   Access

   GP and respiratory specialist

   Watch for

   New breathlessness, eye or heart symptoms mean treatment may be needed.

2. Step 2 · PrescriptionPrednisolone (a corticosteroid)Usually started at about 20 to 40 mg a day and tapered, often for 6 to 12 months or more. Steroid creams or eye drops for skin or eye disease.

   Works

   European Respiratory Society 2021 guideline recommends it first for symptomatic lung disease; improves lung function and symptoms in the short term

   Access

   PBS-subsidised

   Watch for

   Weight gain, mood changes, raised blood sugar and bone thinning with long courses; bone protection may be advised.

3. Step 3 · SpecialistSteroid-sparing medicines: methotrexateAdded when steroids are needed long term or cause side effects. Azathioprine, leflunomide or mycophenolate are alternatives.

   Works

   Recommended second line by the ERS 2021 guideline; lets many people lower steroid doses

   Access

   Specialist-guided; PBS-subsidised

   Watch for

   Needs regular blood tests for liver and blood counts; avoid in pregnancy.

4. Step 4 · SpecialistInfliximab and other optionsAn infused biologic for severe or stubborn disease, or heart or brain involvement. Lung transplant is rare, for advanced scarring.

   Works

   ERS 2021 suggests infliximab third line; helps some people with resistant disease

   Access

   Specialist only

   Watch for

   Infection risk, including TB reactivation; screening first.

Results are typical figures from trials, not promises. Your specialist will tailor treatment to you.

Living with it

• Don’t smoke, and avoid dusty or mouldy environments where you can.
• Don’t start vitamin D or calcium supplements without checking your calcium first.
• Get your flu, COVID-19 and pneumococcal vaccines, especially if you’re on immune-suppressing treatment.
• Have an eye check even without eye symptoms, as eye sarcoidosis can be silent.
• Fatigue can linger after the inflammation settles; pacing and gentle exercise help.

See your GP if

• A cough or breathlessness lasts more than 3 weeks
• You have tender red lumps on your shins with fever or sore ankles
• You have known sarcoidosis and notice new symptoms, more thirst and passing urine (possible high calcium), or palpitations
• You’re tired all the time with night sweats or weight loss

Get urgent help for fainting, a racing or very irregular heartbeat, chest pain, sudden severe breathlessness, or sudden loss of vision or a painful red eye: call 000 (Australia) or your local emergency number, or go to an emergency department for eye problems.

Outlook. About two in three people recover within a few years, many without treatment. Up to about 1 in 3 have long-lasting disease, and a small number develop lung scarring or heart involvement, which need specialist care. Sarcoidosis Awareness Month is in April: see our health days calendar.

Evidence and more information

• Crouser et al, ATS 2020: Diagnosis and detection of sarcoidosis
• Baughman et al, ERS 2021: Clinical practice guidelines on treatment of sarcoidosis
• NHS: Sarcoidosis

Updated 8 November 2026. General education, not personal medical advice. Treatment depends on your situation, so talk to your GP or specialist.

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