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Patient Information Leaflets (PILs)

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 will tell you what it is, what causes it, how it is diagnosed, how it can be treated and where to find out more about it.

What is sarcoidosis?

Sarcoidosis is a disease that can affect one or more organs of the body. Most commonly it affects the skin, lungs, lymph nodes, or eyes. Less often it can affect the joints, the nervous system, the liver and the kidneys. Sarcoidosis causes a type of inflammation known as a ‘granuloma’, which consists of a cluster of cells that can cause raised lumps on the skin. Having involvement in one part of the body does not necessarily mean it will extend to other organs.

What causes sarcoidosis?

The cause of sarcoidosis is not fully understood. It is thought to be due to changes in the immune system. Both genetic and environmental factors such as exposure to infection may play a role but their roles are unclear.

Sarcoidosis is not infectious and is not a cancerous condition. It cannot be passed from person to person. It can affect people of all ages and races and is seen more commonly in women than men. The disease is often diagnosed between the ages of 30 to 70 years.

What are the symptoms of sarcoidosis?

Sarcoidosis can present with several different symptoms, or in its early stages it may have none at all. Symptoms can be quite non-specific, like feeling tired, losing weight, shortness of breath, or aches and pains in the joints.

When sarcoidosis affects the skin, it can have several different appearances.

How does sarcoidosis affect the skin?

  • Papules and plaques. This is the most common presentation for sarcoidosis is on the skin in the form of small raised bumps (papules) or larger raised plaques. They may be purplish red or brown in colour. They can occur anywhere on the body, including the face.   
  • Erythema nodosum. These are fleshy tender lumps or nodules that often occur on the shins. As they fade, they may leave behind a bruise-like discolouration of the skin. Some people experience fever, sore joints and feel unwell when erythema nodosum first appears. One in 4 people who have sarcoidosis will have this skin condition.
  • Lupus pernio.This refers to dark red, purplish or brown swollen areas that appear on the nose, cheeks, ears or fingers. It can be difficult to treat successfully and result in scarring when it settles down. This type of skin presentation is associated with sarcoidosis in other parts of the body such as the lungs.

There are rarer types of sarcoidosis in the skin, including scar sarcoidosis, where an existing scar or tattoo becomes red, raised and more firm than the surrounding skin. Sarcoidosis can also affect the scalp where it may present as a rash and rarely, hair loss. It may affect the nails in many ways including thickening, ridging and rarely scarring and nail loss. It rarely affects the mouth and may cause localised swelling or raised lumps or nodules.  

How is sarcoidosis in the skin diagnosed?

In order to diagnose sarcoidosis in the skin a small sample (biopsy) is taken from the affected skin by your doctor and then looked at under the microscope.

Your doctor may perform blood tests to check the level of calcium and angiotensin-converting-enzyme (ACE) in the blood. Both of these can be elevated in sarcoidosis. Depending on your symptoms, your doctor may also perform tests such as a chest x-ray, lung function tests or ECG and consider referring you to other specialists such as respiratory medicine doctors.

Can sarcoidosis be cured?

At present there is no known cure for sarcoidosis. The aim of treatment is to suppress the condition. However in 6 out of 10 people affected by sarcoidosis the disease will completely settle down within 2 to 5 years.

How can sarcoidosis be treated?

Not all patients with sarcoidosis require treatment. The disease can remain stable, or settle down by itself without requiring any treatment.

For sarcoidosis that is only affecting the skin, the most common form of treatment is the application of potent steroid creams or ointments to the affected area of skin. Your doctor may sometimes inject steroid in liquid form directly into the skin lesion to help it settle down.  

If steroids directly applied to the lesion as creams or ointments or injected into the skin lesions do not help sufficiently or if large areas of the skin are affected, then oral medicines that dampen down the immune system may be considered by your doctor such as steroids (prednisolone) or methotrexate.

Where can I get more information about sarcoidosis?

SarcoidosisUK
49 Greek Street
London W1D 4EG
UK Tel: 020 3389 7221
UK Toll Free: 0800 014 8821
Web: www.sarcoidosisuk.org/

Sarcoidosis Association
UK Tel: 01268 230 141
http://www.sa-uk.org

www.uptodate.com/contents/sarcoidosis-beyond-the-basics

For details of source materials used please contact the Clinical Standards Unit (clinicalstandards@bad.org.uk).

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: individual patient circumstances may differ, which might alter both the advice and course of therapy given to you by your doctor.

This leaflet has been assessed for readability by the British Association of Dermatologists’ Patient Information Lay Review Panel

BRITISH ASSOCIATION OF DERMATOLOGISTS
PATIENT INFORMATION LEAFLET
PRODUCED AUGUST 2005
UPDATED MAY 2010, OCTOBER 2013, NOVEMBER 2016, FEBRUARY 2020
REVIEW DATE FEBRUARY 2023

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