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What is Sarcoidosis?

Sarcoidosis is one of the group of conditions known as the "Granulomatous Disorders". In these conditions, small inflammatory nodules or granulomas form in affected tissues. The term granuloma comes from a Latin word meaning little grain or granule. Granulomas are groups of immune cells which are normally part of the body's defence system in illnesses such as tuberculosis and leprosy. Sarcoidosis, however, does not seem to be an infection and it is not known why these granulomas form.

Sarcoidosis (also known as sarcoid) mainly occurs in the lungs and in the lymph glands inside the chest. Lymph glands elsewhere in the body such as in the neck and in the armpits may also be involved. Sarcoidosis can involve any other organ or tissue in the body including the salivary glands, liver, eyes and skin.

What causes Sarcoidosis?

The cause is not known. We do, however, know that it is not a cancer or any other sort of malignant tumour. Some doctors believe that Sarcoidosis is an allergy or a reaction to an infection. Other theories include exposure to pine pollen and various fumes and dusts. None of these theories have been proven.

Who gets Sarcoidosis?

Anyone. Sarcoidosis occurs in all age groups but mainly affects people in their late 20's to early 40's. Approximately 1 in 10,000 people have it. It occurs more commonly in some families. A genetic predisposition to the development of Sarcoidosis is suspected. The incidence of disease differs in some races, being more common in blacks than Caucasians and unusual in those of Asian descent and Australian Aborigines.

What are the symptoms?

Sarcoidosis can affect any part of the body. Swollen lymph glands inside the chest or shadows on the lungs are often an unexpected finding when a routine chest x-ray has been taken for some other reason. Sometimes swollen glands are present elsewhere, such as in the neck. Some people develop red tender lumps on their shins known as erythema nodosum. Sarcoidosis may also affect the eyes, liver, kidneys, heart and brain. Many persons with the disease have no symptoms, or common symptoms when present include breathlessness with exertion, tiredness, cough or chest discomfort. Dry mouth and sore eyes, kidney stones and occasionally skin rashes may occur. Breathlessness often occurs. Sarcoid skin lesions often occur in scars and tattoos. 

What tests are needed?

Sarcoidosis may be difficult to diagnose. Sometimes the diagnosis is suspected when a chest x-ray is done for other reasons. It is important to differentiate Sarcoidosis from other conditions which cause lymph gland enlargement and shadows on chest x-rays.

Your doctor will usually arrange for blood tests, urine tests, breathing tests, electrocardiogram (ECG), chest x-ray and neurological and eye examinations. A biopsy of the lung or lymph gland is often needed to confirm the diagnosis. Other special tests may occasionally be required. This may involve the passing of a bronchoscope into the air tubes to obtain small pieces of tissue from the lung for diagnosis. Your doctor will advise you on which of the above tests you need.

How is Sarcoidosis treated?

Most patients with Sarcoidosis require no treatment because the inflammation goes away by itself. Aspirin, like non-cortisone anti-inflammation drugs, can be useful for milder symptoms.  These patients are said to have a milder form of Sarcoidosis. The remaining patients are usually treated with corticosteroid drugs and the granulomas usually "dissolve" away leaving little trace. The length of treatment varies depending on the response. Other anti inflammatory drugs can sometimes be used in conjunction with corticosteroids or instead of corticosteroids. Such drugs include Methotrexate or Hydroxychloroquine.

What is the usual outcome?

The majority of patients with Sarcoidosis get over their illness within a year or two. If you have significant symptoms such as breathlessness or severe coughing or some vital organ is affected such as the eye or lung, your doctor may advise treatment with corticosteroid drugs. For reasons not completely understood, some patients will develop scar tissue or fibrosis in the region of the granulomas which may damage the organ involved. If there is any evidence that you are at risk of suffering permanent organ damage, your doctor will treat you with corticosteroid drugs aimed at suppressing the inflammation and scar tissue formation.

It is important that your doctor review you regularly until the condition has finally gone away and you no longer require treatment. Periodical check ups may be needed for a number of years and it is possible that your doctor will advise breathing tests or other tests from time to time.

Can Sarcoidosis come back again?

Sarcoidosis does not usually recur. However, very occasionally patients can have relapses as long as 10 years after the first time. Pregnancy is not affected by Sarcoidosis, and females with Sarcoidosis who become pregnant usually get a little better. Very occasionally the disease gets worse after the baby is born, and the patient needs close observation and review in this situation.

Please Note: This information is intended by The Australian Lung Foundation to be used as a guide only and is not an authoritative statement. Please consult your family doctor or specialist respiratory physician if you have further questions relating to the information provided here.

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