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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 clear.  Usually several 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.

The fact remains that 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 occasionally runs in families.

What are the symptoms of sarcoidosis?

In its earliest stages, sarcoidosis may cause few if any symptoms; and those that do occur may be general ones, like those of many 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: it 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.  It may look embarrassing, but usually gives rise to few symptoms.

What does sarcoidosis of the skin look like?

Only about a quarter of patients with sarcoidosis have changes in their skin; and some have skin changes without sarcoidosis anywhere else.  The most common skin changes are:

·          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.

·          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.

·          Lupus pernio.   Dusky bluish swollen areas may come up on the fingers, nose, and sometimes on the ears.

How will sarcoidosis be diagnosed?

Some patients have no symptoms and their sarcoidosis is found by chance, for example by a routine chest X-ray.  Others feel unwell, lose weight or have joint pains; and their sarcoidosis is found when these symptoms are investigated.

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 cannot guarantee to get rid of it once and for all.  On the other hand many people with sarcoidosis get better without any treatment at all.  Sarcoidosis is rather unpredictable but, as a general rule, if it starts slowly it may last for a long time, and if it comes quickly, it may go away quickly too.

How can sarcoidosis be treated?

·          Careful monitoring.  Many people with sarcoidosis may not need treatment, and get better without it.  This fact makes it sensible to avoid using strong internal treatments at the start, as they carry the risk of causing severe side effects.  Instead, your doctor will monitor you closely at that stage to make sure that all is going well.  In addition you may need to be followed up in more than one hospital clinic (e.g. eye, chest, or skin).

·          Topical treatments.  Potent corticosteroid creams or ointments may help sarcoidosis of the skin; and corticosteroids are sometimes be injected into particularly stubborn patches. 

·          Internal treatments.  Some patients require only symptomatic therapy, such as nonsteroidal anti-inflammatory drugs.

There are a variety of reasons for using stronger internal treatments in a minority of patients with sarcoidosis. They are usually started when the sarcoidosis is causing symptoms or getting worse. Reasons for using them include:

1.       Skin sarcoidosis that is distressing or unsightly.

2.       Worsening of sarcoidosis of the lungs.

3.       Sarcoidosis of the eyes that is not responding to corticosteroid drops.

4.       Fever, weight loss, or the involvement of other internal organs.

The most commonly used strong internal treatment is with corticosteroid tablets (which are related to cortisone).  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 such as methotrexate, azathioprine, hydroxychloroquine or the antibiotic minocycline, may be tried.

What can I do?

·          To avoid damaging your lungs, don’t smoke, and avoid contact with chemicals and dusts.

·          See your doctor regularly so that your sarcoidosis can be monitored.

·          If you are put on corticosteroid tablets, discuss with your doctor the best ways of avoiding side effects.

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

Self-help Groups

British Lung Foundation

73-5 Goswell Road,

London   EC1V 7ER

enquiries@blf-uk.org

SILA (Sarcoidosis and Interstitial Lung Association)

Tel: 020 7237 5912