What is sarcoidosis?

Sarcoidosis is an inflammatory disease in which cells from the immune system cluster together to form tiny lumps in different parts of the body. These are known as sarcoid granulomas. They usually occur in the lungs and nearby lymph nodes. They are not cancerous.

What are the symptoms of sarcoidosis?

Some people with sarcoidosis have no symptoms, and the condition is just picked up when they have a chest x-ray for another reason.

Other people have mild through to severe symptoms that can develop and disappear very quickly, or develop gradually and last for years.

If you do have symptoms, you might:

• feel tired
• have a fever
• have swollen lymph nodes in the chest, neck, chin, armpits, or groin
• have a rash made of small, itchy or painful bumps on the head, neck or legs (called erythema nodosum)
• lose weight
• have pain and swelling in the joints, especially the ankles
• have blurred vision, red or watery eyes, or be sensitive to light

If many granulomas form in an organ, they can affect how that organ works. Sarcoidosis usually affects the lungs or the lymph nodes next to the lungs, but it can also affect other organs. It can cause problems with the:

• lungs — wheeeze, cough, chest pain or feeling short of breath
• skin — tender reddish bumps, rash or sores
• eyes — blurred vision, pain, severe redness or sensitivity to light
• heart — abnormal heartbeat or heart failure
• brain — headaches, facial paralysis, dizziness, vision problems, seizures, mood swings, hallucinations or nerve pain
• kidney — increased thirst or formation of kidney stones
• joints — swelling and pain (arthritis)
• liver or spleen — jaundice (yellow skin and eyes)

Rarely, sarcoidosis can lead to high levels of calcium in the blood, which makes you thirsty and can result in kidney damage or kidney stones.

What causes sarcoidosis?

The exact cause of sarcoidosis is unknown, though some doctors think it is due to a problem with the immune system or exposure to an infection, chemicals or dust. It is also possible that it runs in families.

The condition may be triggered by an infection or substances in the environment.

How is sarcoidosis diagnosed?

If sarcoidosis is suspected, your doctor is likely to talk to you, examine you and arrange for blood tests, x-rays a CT scan or PET scan, a lung function test, or heart or eye tests.

You might be asked to have a biopsy, in which a piece of tissue is removed by a needle and syringe.

How is sarcoidosis treated?

Many people who have sarcoidosis get better within a couple of years, and do not need any treatment at all beyond regular check-ups.

If the condition is more serious, there are treatments that can help. The exact treatment will depend on the organ affected, however there is no cure.

Treatment involves medicines such as steroids, medicines to suppress the immune system or to reduce inflammation.

You might also need physiotherapy to improve muscle strength or lung function. Some people may need a pacemaker or implanted defibrillator for their heart.

You may need to see your doctor regularly to monitor your condition.

Anybody who has sarcoidosis and smokes should quit.

Resources and support

For support, visit Lung Foundation Australia or contact them on 1800 654 301.