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Patient Information Leaflet

Sarcoidosis of the Skin

What are the aims of this leaflet?

This leaflet has been written to help you understand more about sarcoidosis of the skin. It tells you what it is, what causes it, what can be done about it, and where you can find out more about it.

What is sarcoidosis?

Sarcoidosis is a relatively uncommon disorder which can cause inflammation in any part of the body and which is often slow to get better. Usually several body areas are affected, the commonest being the skin, the lungs and the eyes.

What causes sarcoidosis?

This is not fully understood. However changes in the body’s defence system (the immune system) are found in some people with sarcoidosis though it is not clear what part these play in causing the condition.

Sarcoidosis is not infectious or malignant. It affects people of all races and ages; but is more common in women than in men, in black than in white people, and between the ages of 20 and 40.

Is sarcoidosis hereditary?

Sarcoidosis very rarely runs in families.

What are the symptoms of sarcoidosis?

In its earliest stages, sarcoidosis may cause few if any symptoms; and there may be general ones similar to other conditions, such as feeling tired, losing weight, fever, and joint pains. Sometimes sarcoidosis that has caused no symptoms is found by chance on a routine chest X-ray.

In general, the symptoms of sarcoidosis depend on which parts of the body are affected:

• Involvement of the lungs is common: this can cause a dry cough or shortness of breath.
  
• The eyes are affected at some time in about a quarter of people with sarcoidosis. They may become red, sore, and irritable, or too dry. Vision may become blurred.
  
• About a quarter of people with sarcoidosis have it in their skin.
  

What does sarcoidosis of the skin look like?

Some patients have skin changes without sarcoidosis anywhere else. The most common skin changes are:

• Papules and plaques. Variable numbers of slightly raised, red, purple or brownish areas can appear on any part of the skin. The small ones are known as papules and the larger ones as plaques. Some may be ring-shaped.
  
• Scar sarcoidosis. Existing scars may become inflamed and discoloured, and firmer to the touch than before. Tattoos may also become lumpy.
  
• Erythema nodosum. This can have several different causes, one of which is sarcoidosis. Erythema nodosum occurs in the early stages of sarcoidosis. Tender red bumps appear on the fronts of both shins. They may be associated with a fever, feeling unwell and sore joints. The skin changes last for a few weeks and become more bruise-like as they fade.
  
• Lupus pernio. Dusky bluish swollen areas may come up on the fingers, nose, and sometimes on the ears.
  

How will sarcoidosis be diagnosed?

Tests that are useful in sarcoidosis include:

1. A biopsy. This is the most important test. A sample (a biopsy) is taken from a part of the body involved by the sarcoidosis, and then examined under the microscope. Samples are easy to take if the skin is affected, but more difficult if only an internal organ such as the lung is involved.
   
2. A chest X-ray. Nine out of ten people with sarcoidosis have an abnormal chest X-ray at some time – the most common finding being enlarged lymph nodes.
   
3. Blood tests. Routine blood tests may show very little. Two findings that might suggest sarcoidosis are raised angiotensin-converting enzyme (ACE) and calcium levels.
   
4. Other tests. These will depend on which parts of your body are affected. For example, if your lungs are involved, tests of lung function will be needed. If your eyes are affected, they will be looked at with a special lamp (a slit-lamp).
   

Depending on the results of the tests, you may be asked to see another specialist, for example a chest physician or an ophthalmologist.

Can sarcoidosis be cured?

Treatments for sarcoidosis will suppress it but will not necessarily cure it. Sometimes people with sarcoidosis get better without any treatment at all.

How can sarcoidosis be treated?

1. Careful monitoring. As some patients have mild, asymptomatic sarcoidosis they may not need any treatment other than regular review.
   
2. Topical treatments. Potent corticosteroid creams or ointments may help sarcoidosis of the skin; and corticosteroids are sometimes be injected into particularly stubborn patches or lumps.
   
3. Systemic treatments. Medications by mouth or injectable treatments are usually started when sarcoidosis is causing symptoms or getting worse. They include:
   
4. Oral corticosteroids. These are usually taken for at least 6 months. If they fail to help, or cause side effects (for example, thinning of the bones, high blood pressure, cataracts, or diabetes), other tablets may be added such as:
   

• Methotrexate (see Methotrexate PIL).
• Azathioprine (see Azathioprine PIL).
• Hydroxychloroquine (see Hydroxychloroquine PIL).
• Anti-inflammatory antibiotics e.g. lymecycline, doxycycline.
• Injectable treatments such as infliximab infusions are usually only used for severe or resistant cases of sarcoidosis (see Infliximab PIL).

Where can I get more information about sarcoidosis?

Links to other Internet sites:

www.emedicine.com/med/topic2063.htm
www.nlm.nih.gov/medlineplus/sarcoidosis.html
http://dermnetnz.org/dermal-infiltrative/sarcoidosis.html
www.sila.org.uk/

The British Skin Foundation fund vital research into all skin diseases.  To find out how you can help, please visit the British Skin Foundation website here.

This leaflet aims to provide accurate information about the subject and is a consensus of the views held by representatives of the British Association of Dermatologists: its contents, however, may occasionally differ from the advice given to you by your doctor.

BRITISH ASSOCIATION OF DERMATOLOGISTS
PATIENT INFORMATION LEAFLET
PRODUCED AUGUST 2005
UPDATED MAY 2010