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 but can occur anywhere in the body. They are not cancerous.

What are the symptoms of sarcoidosis?

Some people with sarcoidosis have no symptoms, but your doctor might see that you have it when you have a scan or chest x-ray for another reason.

Other people have symptoms that range from mild to severe. Symptoms might develop and disappear very quickly, or develop gradually and last for years.

If you do have symptoms, 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 the 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 many granulomas form in a body 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 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)

What causes sarcoidosis?

The exact cause of sarcoidosis is not known, but 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.

When should I see my doctor?

You should see your doctor if you are having any of the symptoms of sarcoidosis that do not go away in a few weeks and cannot be explained by another condition.

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

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

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

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 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 symptoms and prevent damage to 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 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.

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 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 seek support when you feel you need it

Anybody who has sarcoidosis and smokes should quit.

Can sarcoidosis be prevented?

Sarcoidosis cannot be prevented.

Are there complications of sarcoidosis?

Sarcoidosis often doesn’t require treatment or may be localised to a specific area of the body. Some people, however, have severe disease or disease that affects many areas of the body. These people may have ongoing medical problems that require ongoing treatment and medical follow up.

Resources and support

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

Call healthdirect on 1800 022 222 at any time to speak to a registered nurse (known as NURSE-ON-CALL in Victoria) for more information and advice.