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History of Sarcoidosis

Sarcoidosis is a disease first recognised in 1877 by the English skin specialist, Dr Johnathan Hutchinson. He later reported the case of a lady who had a unusual skin condition, to the Dermatological Society of London in 1895. He named the condition "Mortimer's Malady", after the patient. At the turn of the century a Norwegian skin specialist named Boeck called this condition 'sarkoid' as he thought it was a type of sarcoma, a form of tumour. It was called "Boeck's Sarcoid" in his honour, the name used widely throughout this century. It is now called sarcoidosis.

What is Sarcoidosis?
Sarcoidosis is a chronic disease of unknown cause which affects mainly the lungs, liver, lymph glands and salivary glands. Small nodules or granulomas form in these areas, often damaging them. It is not cancerous or malignant. It belongs to a group of conditions which cause chronic inflammation, called "granulomatous diseases". Granuloma comes from a Latin word meaning little grain or granule.

How do these granulomas form?
The blood is made up of red and white cells; the white cells act mainly fighting infection. When certain substances or bacteria get into the body, special white cells, surround bacteria and stay there until they are killed. In sarcoidosis, immune cells in the tissues group together for form granulomas. So far no bacteria or substances have been isolated (rather like a rugby scrum with all the players grouped around the ball; only with sarcoidosis the ball is invisible). Scientists are still unable to say exactly why sarcoid granulomas form, despite extensive research into sarcoidosis. However they suspect several types of bacteria.

Is it contagious?
Although sarcoidosis is not contagious, it occurs more commonly in some families and has been recorded to occur rarely in people of close contact and non-related family members eg. husband or wife. There also appears to be a genetic predisposition to develop sarcoidosis.

Who can get this disease?
Anyone can get sarcoidosis, from children to the elderly. However, it mainly affects people in their late 20's to early 40's, and in Australia appears to be more common in men within the age group. Approximately 1 in 10 000 people have it. There is evidence that Beethoven may have had sarcoidosis and that it may have caused his hearing loss (rare sarcoidosis). (Without sarcoidosis we may not have the 9th symphony!) In the USA, sarcoidosis occurs far more commonly in blacks than in whites, blacks often having more severe disease. It is unusual in Asians and Australian aborigines probably due to genetic factors incompletely understood.

How do I know I have it?
Sarcoidosis can affect any part of the body. Many patients have no symptoms at all and are diagnosed on routine chest X-ray. Common symptoms are severe tiredness, chest pain, breathlessness, coughing, numb patches on the skin, dry mouth and sore eyes, kidney stones, and occasionally skin rashes or nodules. Sarcoid skin lesions often occur in scars and tattoos.Chest pains, either sharp and of short duration in the sides of the chest, or dull and aching behind the breast bone, are very common (25%) and sometimes may mimic a heart attack or pleurisy.

How is it diagnosed?
Because sarcoidosis can cause many unrelated symptoms over a period of years, it can be puzzling for doctors and difficult to diagnose. The doctor will ask you to have investigations which may include tests of blood, urine, breathing, chest x-ray, electrocardiograph (ECG), neurological and eye examinations. There are also a range of special tests. Your doctor will advise you on which you will need. There is a list of tests at the end of this document.

What is the usual outcome?
Young women who present with an unusual rash on their legs associated with sarcoidosis (Erythema nodosum), usually need to corticosteroid treatment. The majority of patients are over their illness within a year or two. Regular review by your specialist will be needed until the disease has finally gone away, and after this time, periodic check-ups may be needed for some years. For reasons not completely understood, some patients will develop scar tissue in the region of the granulomas which may damage the organs such as the lung, eye, heart etc. Because of that potential problem, your doctor may elect to give you Corticosteroid if there is evidence that you are at risk of suffering some permanent damage to a particular organ if left untreated.

How the disease effects people in Australia is currently being researched. So far it appears that Australian men have more chronic chest involvement requiring corticosteroid treatment. Elderly people, especially women, have chronic disease more frequently involving organs outside the chest (such as the nervous system).

What is the main treatment?
From overseas studies, 8 out of 10 patients with sarcoidosis require no treatment because the granulomas go away by themselves. These patients usually have a milder form of sarcoidosis. In the other 20% treatment with Corticosteroid (usually Prednisolone) will usually "dissolve" the granulomas with little trace. Treatment may last for one or two years but sometimes longer until the disease comes under control.

What are the side effects of Corticosteroids?
Please ask your doctor about the special information sheet on Corticosteroid produced by the Thoracic Society of Australia and New Zealand .

What has sarcoidosis to do with the dentist?
Many people with sarcoidosis have a dry mouth due to the involvement of the salivary glands. As this can predispose to dental cavities, regular dental check-ups are advisable as well as artificial saliva or special chewing gum or drops (as your doctor). Tell you dentist you have sarcoidosis.

Can sarcoidosis come back again?
Not usually, but very occasionally patients can have relapses as long as ten years after the initial attack and may need treatment again.

Glossary of tests

Blood tets

Blood is taken from a vein in your arm with a small needle. An enzyme in the blood called serum ACE (Angiotensin Converting Enzyme), when elevated, indicates that sarcoidosis is present. Other blood tests such as serum calcium, liver function, and tests of the immune antibodies (immunoglobulins) may also be abnormal.

Urine Test (24 hour urine calcium)

Sarcoidosis granulomas often produce excessive amounts of vitamin D which is important in regulating calcium in the body. Excessive amounts in the blood or urine can be damaging and cause thirst, tiredness, passing of excessive urine, kidney stones, renal colic or kidney impairment. A 24 hour collection of urine can tell if the amount of calcium in the urine is excessive. This can be treated by reducing the intake of milk and cheese, avoiding excessive sunlight (which increases vitamin D), not taking multivitamins containing vitamin D, and drinking plenty of fluid. Sometimes corticosteroid treatment is necessary.

Respiratory Function tets

  • Spirometry - You will be asked to take a deep breath in and blow through a machine as fast as you can to assess your lung capacity.
  • Carbon-monoxide uptake - This test measures how well gas is absorbed from the lungs into the blood stream because sarcoidosis can damage the air sacs in the lung.
  • Respiratory exercise test - You may be asked to pedal an exercise bike while you breathe into a machine that assesses your heart and lung capacity during exercise.

Thallium scan

A stress thallium scan is an exercise test involving the injection of a small amount of radioisotope (thallium) which lasts only a very short time. This is taken up by the heart and shows abnormalities, particularly found in sarcoidosis.

Chest x-ray

You will require periodic chest x-rays to assess if there is any sarcoidosis in your chest. It is safe to have x-rays in moderation, unless you are pregnant.

Computerised axial tomography (CT, CAT scan)

This is a special type of x-ray. It is safe and painless. You lie still for a few minutes in a machine shaped like a doughnut. Sometimes the doctor may need to inject contrast, a special dye injected into the vein to demonstrate sarcoidosis more clearly. If you have allergies especially to seafood or iodine, you should tell your doctor.

Electrocardiograph (ECG)

This test looks at the conducting system of the heart. Sarcoidosis may cause irregular heart rhythm or palpitations in a minority of patients (5%).

Echocardiograph

This uses ultrasound pictures to show how well the heart pumps (similar to that used in pregnancy to observe the baby developing in the womb).

Eye and neurological examination

It is important to have an annual eye check-up by an Eye Specialist, as sarcoidosis can involve any part of the eye, as well as reduce the production of tears. It can also involve the central and peripheral nervous system. Some patients may need a neurological examination by a specialist (a Neurologist).

PET (Positron emission tomography)

PET is a diagnostic examination that is used to evaluate a variety of diseases. PET scans can be performed of the whole body or just an area (ie. Cardiac PET).

Bronchoscopy

A long flexible telescope is passed through your nose or mouth to your bronchial tubes. Before this test, you may be given a sedative to make you sleepy. It may be done under general anaesthetic or local anaesthetic. A small biopsy may be taken from the lung to confirm the diagnosis of sarcoidosis. A lavage may also be done. (See our page on Bronchoscopy)

Lavage (French word meaning to wash)

A small part of the lung can be washed with 100-200mls of salty water (saline solution) to yield special white cells called lymphocytes, which are increased in sarcoidosis. The test helps assess the disease process in the lungs.

Mediastinoscopy

If the bronchoscopy does not confirm the diagnosis, a mediastinoscopy may be done under general anaesthetic. A surgeon passes a small instrument behind the breast bone and takes biopsies of the lymph glands in the chest. Most patients can go home the day after the procedure.

Gallium-67 scan

Gallium is injected into a vein and it gives off a small amount of radioactivity for a few days. A picture of the gallium in the body is taken 2 or 3 days later by a gamma camera placed over the body for about 30 minutes. This produces an accurate picture of the areas of the body most involved with sarcoidosis. Gallium scans often reveal sarcoidosis in the chest, salivary glands, lungs and spleen.

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The material on this website is for your information only. Whilst we have taken all reasonable steps to ensure the accuracy and completeness of contents of this website, to the extent permitted by applicable law, the author accepts no responsibility for loss suffered as a result of any reliance on any part of its contents. Any medical information on this website is not intended as a substitute for informed medical advice. Prof. Roger Allen is not responsible for the content of any linked site, changes or updates. Links are provided for your convenience inclusion does not imply endorsement.

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