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Patient Information Leaflets (PILs)

DISCOID LUPUS ERYTHEMATOSUS

What are the aims of this leaflet?

This leaflet has been written to help you understand more about DLE. It tells you what it is, what causes it, what treatments are available, and where you can find out more about it.

What is discoid lupus erythematosus?

The term ‘lupus erythematosus’ is applied to a group of related disorders. ‘Discoid’ lupus erythematosus (DLE) is one of these often confined to the skin and is not commonly associated with symptoms from other organs. It is characterised by persistent, localised, red or pink scaly patches of skin most often on the head and neck, including the scalp and ears. Less often the rash can be more generalised.  Uncontrolled inflammation may lead to permanent skin damage e.g. scarring hair loss/alopecia, darker or lighter pigment changes or scarring.

What causes discoid lupus erythematosus?

The cause of DLE is not fully understood but is thought to be an autoimmune disease. We all have an immune system which makes the antibodies that are needed to fight off infections. Normally these antibodies do not attack our own tissues. However, in an autoimmune disease, the immune system makes a mistake and fights our own body instead. The mistake made by the immune system in DLE is to view the cells in our skin as ‘foreign’ and to make antibodies that damage them.  The disease is more common in females than males.  It is also more common in patients from particular ethnic groups.

Although DLE is uncommon in children, it is associated with increased risk of progression to systemic lupus erythematosus or SLE.  Factors that may increase your risk of DLE or make it worse include exposure to sunlight, stress, infection, smoking and trauma.

Is discoid lupus erythematosus hereditary?

Some families may carry genes that increase the risk of developing DLE. However, it is not entirely clear how the affected genes do this, or to what degree they influence the disease. It is thought that a combination of environmental factors and genetics most likely contribute to the development of DLE.

What are the symptoms of discoid lupus erythematosus?

Occasionally the affected areas of skin can be uncomfortable or itchy. When the areas resolve they may also cause permanent scarring, hair loss and changes to the colour of the involved skin. In most patients, there is no effect on their general health.

What does discoid lupus erythematosus look like?

DLE commonly affects the face and areas of the scalp containing hair but occasionally can spread to other body sites including arms, legs and torso. It may also affect the eyes, lips, mouth and ears. The rash comprises red scaly patches, which tend to clear eventually, resulting in thinning, scarring or colour change in the skin. The scaling can sometimes be quite thick and resemble a wart. When the scalp is involved, hair in the affected area may be permanently lost.

How can discoid lupus erythematosus be diagnosed?

A doctor may be able to make a diagnosis after an examination, but in most cases it is necessary to take a small sample of skin (a biopsy) to be examined under a microscope in order to confirm the diagnosis. Other tests may be performed including blood and urine tests. 

Can discoid lupus erythematosus be cured?

No. Like many autoimmune conditions, DLE is generally a lifelong condition. However, there are treatments available that are usually effective and can help keep symptoms under control. 

Self care (What can I do?)

1)    If you smoke, we strongly recommend that you stop. Smoking can make this condition worse and may also result in a poor response to treatment.

2)    Sun Protection should be part of your daily routine year-round as sunlight can trigger flares of the condition:

  • Protect your skin with clothing, don’t forget to wear a hat that protects your face, neck and ears, and a pair of UV protective sunglasses.
  • Clothing can be a very effective sunblock particularly for your shoulders and arms. However, if you can see through your shirt or blouse easily, then sunlight can get through to your skin. White, close-weave but loose-fitting clothing is best.
  • Daily sunscreen is recommended. When choosing a sunscreen look for high SPF (SPF 30 or more) to protect against UVB and UVA. Apply plenty of sunscreen 15 to 30 minutes before going out in the sun, and reapply every two hours and straight after swimming or towel-drying.
  • Strictly avoiding sunlight can reduce Vitamin D levels. Therefore, it may be worth taking Vitamin D supplements, available from pharmacies and supermarkets.

How can discoid lupus erythematosus be treated?

Local treatments:

Strong or very strong corticosteroid creams and ointments are commonly offered as a first line treatment and can be used safely even on the face under the direction of your dermatologist.  Other topical treatments which may be offered in addition or as an alternative to topical corticosteroids, are the topical calcineurin inhibitors, pimecrolimus and tacrolimus.  In some patients with localised patches, injections of corticosteroids may be very effective.

Systemic treatment:

If your skin rash is more severe, widespread, or if these measure do not work then oral medications may be used. The most commonly used medications are the anti-malarial drugs hydroxychloroquine and mepacrine, which may be used in combination.  As these medications may take some time to work, some patients may be prescribed oral corticosteroids for a short period.  Occasionally, some patients may need additional medications, which include the immunomodulatory drugs methotrexate and mycophenolate mofetil.

Vitamin D advice

The evidence relating to the health effects of serum Vitamin D levels, sunlight exposure and Vitamin D intake remains inconclusive. Avoiding all sunlight exposure if you suffer from light sensitivity, or to reduce the risk of melanoma and other skin cancers, may be associated with Vitamin D deficiency.

Individuals avoiding all sun exposure should consider having their serum Vitamin D measured. If levels are reduced or deficient they may wish to consider taking supplementary vitamin D3, 10-25 micrograms per day, and increasing their intake of foods high in Vitamin D such as oily fish, eggs, meat, fortified margarines and cereals. Vitamin D3 supplements are widely available from health food shops.

 

Where can I get more information about discoid lupus erythematosus?

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 FEBRUARY 2008
UPDATED JANUARY 2011, FEBRUARY 2014, JULY 2017, APRIL 2021
REVIEW DATE APRIL 2024

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