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Sarcoidosis

Published by Bupa's health information team, May 2009.

This factsheet is for people who have sarcoidosis, or who would like to know more about it.

Sarcoidosis is a disease in which tiny lumps of inflammatory cells called granulomas develop in different areas of the body. The disease often affects the lungs, but it can target any area of the body including the skin, lymph nodes and liver.

• About sarcoidosis
• Symptoms of sarcoidosis
• Complications of sarcoidosis
• Causes of sarcoidosis
• Diagnosis of sarcoidosis
• Treatment of sarcoidosis
• Questions and answers
• Related topics
• Further information
• Sources

About sarcoidosis

Around one person in every 10,000 has sarcoidosis in the UK. It can affect people of all ages but it's most common in young adults aged between 20 and 40 years. The prevalence of sarcoidosis is higher in Northern Europeans and African-Americans. The number of people who have sarcoidosis is higher in women than men.

There are two types of sarcoidosis:

Acute sarcoidosis (Lofgren's syndrome)

Acute sarcoidosis occurs suddenly. It causes swollen lymph nodes, pink to blue large tender lumps on your lower leg, fever and joint pain. Acute sarcoidosis usually heals naturally.

Chronic sarcoidosis

The symptoms of chronic sarcoidosis occur gradually over a number of years. It causes scarring to your lungs that gets progressively worse and can lead to permanent damage. It can also affect other areas of your body including your heart and brain.

Symptoms of sarcoidosis

Most people with sarcoidosis have no symptoms and are diagnosed by accident when they have an X-ray for other reasons.

The general symptoms of sarcoidosis include:

• fever
• fatigue
• chest pain
• feeling unwell
• weight loss
• night sweats

Symptoms of sarcoidosis can vary from person to person depending on the severity of the disease and the organ affected.

Lungs

• shortness of breath
• cough

Skin

• raised, tender lumps on lower legs (erythema nodosum). This is accompanied by a fever and joint pain
• discoloration of your nose, cheeks, lips and ears (lupus pernio)
• flat raised bumps or lumps on or just under the skin

Eyes

• inflammation
• red and painful
• dry and sensitive to light
• blurred vision
• glaucoma that can lead to blindness in severe cases

Bones and joints

• aching joints
• inflammation
• swelling

Heart

• chest pain (angina)
• irregular heartbeat
• heart failure in severe cases

Nervous system

• double vision
• numbness or pins and needles

Kidney

• high levels of calcium can build up in your blood and urine. This causes vomiting, thirst and excessive urine production. Over a period of time it can lead to kidney stones and eventually kidney failure

Liver and spleen

• enlarged liver and spleen can cause anaemia (a condition where you have too few red blood cells, or enough of the oxygen-carrying pigment called haemoglobin)

Complications of sarcoidosis

Around half of all people who recover from sarcoidosis will relapse. Scar tissue can affect how the organ works and causes disability in one out of ten people with sarcoidosis. People who have sarcoidosis in the chest are more likely to recover compared to those whose symptoms have spread to other areas. In rare cases sarcoidosis can result in death. Less than three in 100 people die from sarcoidosis and it's usually the result of lung scarring that leads to heart failure.

Causes of sarcoidosis

The exact cause of sarcoidosis is not known. It's thought that the disease could result from an infection or by something in the environment. Sarcoidosis has also been seen to affect a small number of people in the same family.

Diagnosis of sarcoidosis

If you think you have sarcoidosis you should visit your GP. He or she will ask you about your symptoms and examine you. Your GP may also ask you about your medical history.

There are a number of tests that can be carried out to screen for sarcoidosis. Your GP will refer you to a specialist who will organise the tests. The test that you have will depend on what part of your body is affected. This will help to determine the amount of damage to your organs and find out whether you need treatment.

The tests commonly used include:

• Chest X-ray of your heart and lungs. These are performed to check the condition of your lungs. Granulomas and enlarged lymph nodes will show up on the X-ray.
• Computerised tomography (CT) scan. This gives a computer-generated image of an organ. Your doctor can use it to show if the organ has been affected by sarcoidosis.
• Biopsy of the affected organ, such as skin, muscle or lymph node.
• Bronchoscopy. This procedure involves passing a telescope through your nose to your lungs where the doctor can take a sample of the cells.
• Blood test. This will measure a number of different substances in your blood including your calcium levels and whether your liver and kidneys are working well.
• Electrocardiograph. This test will show if your heart has been affected by sarcoidosis.
• Lung function test. This will show if your lungs have been affected by sarcoidosis.
• Ultrasound scan of heart (echocardiograph).
• Ultrasound scan of liver or spleen.

Treatment of sarcoidosis

Most people with sarcoidosis don't need treatment as the symptoms improve or clear up naturally. The treatment you need will depend on the severity of your symptoms, how the part of your body is affected and whether any of your vital organs such as heart and lungs are affected.

Medicines

If you have acute sarcoidosis, your doctor may recommend painkillers such as ibuprofen and paracetomol. Always read the patient information that comes with your medicine and if you have any questions, ask your pharmacist for advice. If you have severe joint pain, fever or a rash on your skin, your doctor may prescribe you a short course (two to three weeks) of a corticosteroid called prednisolone.

Chronic sarcoidosis is commonly managed with a corticosteroid called prednisolone. You will need to take a moderate to high dose for six to eight weeks. This dose will gradually be reduced until your treatment stops. Your treatment will last between six months and two years, depending on how your body responds to the medicine.

Prednisolone can have side-effects so always ask your doctor for advice and read the patient information leaflet that comes with the medicine. It's important to remember that, although prednisolone can control the symptoms of sarcoidosis, it doesn't prevent lung scarring. If your symptoms are severe your doctor may also prescribe a medicine called methotrexate. This will help to reduce the amount of prednisolone you need to take and improve recovery time.

If your symptoms don't improve after taking prednisolone, your doctor may prescribe an immunosuppressant called cyclosporin or azathioprine.

Your doctor may prescribe you chloroquine or hydroxychloroquine for treating skin sarcoidosis.

Your symptoms will be monitored using chest X-rays, lung function tests, blood tests or CT scans throughout your treatment. Once your symptoms have improved you will have these tests regularly to check that sarcoidosis hasn't come back.

Related topics

• Glaucoma
• Angina
• Anaemia - a general overview
• CT scan

Further information

• British Lung Foundation
  08458 50 50 20
  www.lunguk.org

Sources

• Sarcoidosis. British Lung Foundation. www.lunguk.org, accessed 11 November 2008
• Beers MH, Fletcher AJ, Jones TV, et al. The Merck Manual of Medical Information. 2nd ed. New York: Pocket Books, 2003:304-306
• Sarcoidosis. Epidemiology. GP Notebook. www.gpnotebook.co.uk, accessed 13 November 2008
• What is sarcoidosis? National Heart Lung and Blood Institute. www.nhlbi.nih.gov, accessed 19 November 20088
• Simon C, Everitt H, Kendrick T. Oxford handbook of general practice. 2nd ed. New York: Oxford University Press, 2007:396
• How is sarcoidosis diagnosed? National Heart Lung and Blood Institute. www.nhlbi.nih.gov, accessed 19 November 2008
• Sarcoidosis. Investigations. GP Notebook. www.gpnotebook.co.uk, accessed 9 February 2009
• How is sarcoidosis treated? National Heart Lung and Blood Institute. www.nhlbi.nih.gov, accessed 19 November 2008
• Sarcoidosis. Treatment. GP Notebook. www.gpnotebook.co.uk, accessed 13 November 2008

This information was published by Bupa's health information team and is based on reputable sources of medical evidence. It has been peer reviewed by Bupa doctors. The content is intended for general information only and does not replace the need for personal advice from a qualified health professional.

Publication date: May 2009