What is sarcoidosis?

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

What are the symptoms of sarcoidosis?

If you have symptoms of sarcoidosis, you might:

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

If lots of granulomas form in a body organ, they can affect how it 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 your:

• lungs — causing wheeze, cough, chest pain or feeling short of breath
• skin — causing tender reddish bumps, rash or sores
• eyes — leading to blurred vision, pain, severe redness or sensitivity to light
• heart — leading to abnormal heartbeat or heart failure
• brain — causing headaches, facial paralysis, dizziness, vision problems, seizures, mood swings, hallucinations or nerve pain

It can also cause problems with your:

• kidney — causing increased thirst or formation of kidney stones
• joints — leading to swelling and pain (arthritis)
• liver or spleen — leading to jaundice (yellow skin and eyes)

You may have symptoms that range from mild to severe. Your symptoms might develop and disappear very quickly or develop gradually and last for years.

Some people with sarcoidosis have no symptoms. Your doctor might notice that you have it when you have a CT scan or chest x-ray for another reason.

Sarcoidosis is most common in people aged between 20 to 40 years.

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What causes sarcoidosis?

The exact cause of sarcoidosis is not known, but some doctors think it’s due to:

• a problem with your immune system
• an infection
• exposure to substances in the environment, such as chemicals or dust
• your family health history

It‘s more common in females than in males.

When should I see my doctor?

You should see your doctor if you are having sarcoidosis symptoms that do not go away after a few weeks and can’t be explained by another condition.

Sometimes the skin symptoms start first. See your doctor if you find groups of reddish-brown lumps on your skin.

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How is sarcoidosis diagnosed?

If your doctor thinks you may have sarcoidosis, they will ask you questions and examine you. They may also arrange for you to have:

• blood tests
• x-rays
• a CT scan or PET scan
• a lung function test
• heart tests
• eye tests

You might need a needle biopsy, which is where a small sample of skin or body tissue is removed and sent to a lab to be analysed.

Sarcoidosis can be difficult to diagnose, and you will usually need a referral to a specialist.

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How is sarcoidosis treated?

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

If your condition is progressive or more serious, there are treatments that can help. The exact treatment will depend on the organ affected. There is no cure for sarcoidosis.

Treatment involves medicines such as:

• steroids — to relieve your symptoms and prevent damage to any affected organs
• immune system suppressants — to help reduce the activity of your immune system
• anti-inflammatories — to reduce inflammation

You might also need physiotherapy to improve your muscle strength or lung function.

You may need a pacemaker or an implanted defibrillator to ease your heart symptoms.

Living with sarcoidosis

Sarcoidosis is a chronic (long term) condition. You should have regular check-ups with your doctor. To help maintain your health and feel your best, you can:

• participate in daily exercise to help stay fit
• maintain a healthy diet and lifestyle
• keep up to date with your vaccinations (ask your doctor which vaccines are right for you)
• use oxygen therapy if prescribed by your doctor
• stay connected with your family and friends
• ensure you get support when you need it

Anybody who has sarcoidosis and smokes should quit.

What are the complications of sarcoidosis?

If you have severe disease or a disease that affects many areas of your body, you may have ongoing medical problems. You may require treatment and medical follow up for many years. Complications could affect your eyes, nervous system, liver, heart and kidneys.

People with sarcoidosis should be monitored for:

• eye problems — glaucoma, vascular retinitis, optic atrophy, cataracts
• nervous system problems — facial palsy, seizures, neuropathy
• infections
• worsening heart or lung problems
• kidney stones
• side effects of corticosteroid medicines

Can sarcoidosis be prevented?

Sarcoidosis can’t be prevented.

Resources and support

For support, you can visit Lung Foundation Australia or call them on 1800 654 301. They also have a fact sheet on sarcoidosis of the lungs.

You can call the healthdirect helpline on 1800 022 222 (known as NURSE-ON-CALL in Victoria). A registered nurse is available to speak with you 24 hours a day, 7 days a week.