What are the aims of this leaflet?
This leaflet has been written to help you understand more about lichen planopilaris. It tells you what lichen planopilaris is, what causes it, what can be done about it, and where you can get more information about it.
What is lichen planopilaris?
Lichen planopilaris is a type of scarring hair loss that occurs when a relatively common skin disease, known as lichen planus, affects areas of skin where there is hair. Lichen planopilaris destroys the hair follicle and then replaces it with scarring. It is between 2 and 5 times more common in women than it is in men and is seen mostly in Caucasian adults, with the commonest age of onset being in the mid-40s.
What causes lichen planopilaris?
The cause of lichen planopilaris is unknown, but it may be linked with the body’s immune system. T-lymphocytes, a type of white blood cell, are known to be involved, however, the trigger is not yet known. The hair loses its protection from the immune system. The immune system then starts to attack the hair follicle. Both lichen planopilaris and lichen planus are not contagious.
Is lichen planopilaris hereditary?
No, lichen planopilaris is not inherited. However, there may be genes responsible for increasing the risk of developing the condition. These genes affect the immune system and its responsiveness. In a small study, the following genes were found to be associated with lichen planopilaris: HLA DRB1*11 and HLA DQB1*03.
What are the symptoms of lichen planopilaris?
Lichen planopilaris typically causes an intensely itchy scalp. The crown and vertex (top of the scalp) are most commonly affected, and symptoms of pain, burning and scalp tenderness may occasionally be experienced. Gradually, areas of hair loss may be noticed. Lichen planus can also affect the skin, mouth, genitals and nails (for further information, please see Patient Information Leaflet on lichen planus).
What does lichen planopilaris look like?
Lichen planopilaris causes redness and scaling of the skin around the base of a hair and blocking of the hair follicle, which may give the scalp a rough texture.
Where hairs have been destroyed, the scalp may appear smooth and shiny. Any part of the scalp can be involved; lichen planopilaris often occurs in patches, but may involve larger areas. Facial and body hair may rarely be affected.
Other related conditions include:
Frontal fibrosing alopecia. This is a condition that often, but not exclusively, affects post menopausal women. It appears with a slow band-like recession of the frontal hairline, with scarring (fibrosing) along the front of the scalp, and sometimes the sides of the scalp. Loss of eyebrow hair and body hair is also recognised in this condition. (For further information, please see Patient Information Leaflet on frontal fibrosing alopecia).
Graham Little Syndrome (Piccardi-Lasseur-Graham Little Syndrome). This is a condition in which patchy scalp hair loss, similar to classical lichen planopilaris, accompanies loss of armpit and pubic hair and a bumpy, sometimes itchy rash on the body and limbs.
How is lichen planopilaris diagnosed?
A biopsy is often required to confirm the diagnosis. This may involve removing at least 2 small areas of affected scalp skin under local anaesthetic and will leave small scars.
Can lichen planopilaris be cured?
In most cases the condition does eventually become inactive. The hair loss is usually permanent. Although the condition cannot be cured, treatment aims to preserve the remaining hair and help to control symptoms, but cannot cause regrowth of hair that has already been lost.
How can lichen planopilaris be treated?
Lichen planopilaris can be treated with topical medication, such as creams and gels, and also orally with tablets, although success rates can be very variable. Unfortunately, there is no single proven effective treatment for this condition and despite trying many medications some people fail to respond. Some patients choose not to have any treatment at all as this condition does not otherwise affect their general health. You may want to discuss all the options with your GP, family or friends before deciding whether to have treatment.
Treatments to the skin may include:
Topical corticosteroid preparations. Potent steroid based preparations (e.g. lotions, gels, or mousses) can help localised areas of affected skin. Care must be taken to apply the correct amount of steroid to the affected areas, in order to avoid any unaffected skin. Scalp skin is much thicker than facial skin and tolerates steroid applications better than delicate skin, such as that on the face and around the eyes. Steroids can cause thinning of the skin if used incorrectly. Topical steroid preparations can be particularly helpful in improving itch and may also reduce the rash.
Steroid injections into the affected area (known as ‘intralesional steroids’) can be a more effective treatment for a small area; however, steroid injections are often painful or uncomfortable, and have a higher risk of causing adverse effects such as thinning of the skin (atrophy) or dimpling of the skin. (For further information, please see Patient Information Leaflet on intralesional steroid therapy).
Topical calcineurin inhibitor creams and ointments. Although not usually prescribed for lichen planopilaris, these topical treatments can settle local inflammation. They do not have the potential to cause thinning of the skin as seen with topical steroids. Side-effects include stinging on initial application (this usually improves with time). Excessive sun exposure, sunbathing and sunbeds should be avoided while using this treatment (see Patient Information Leaflet on calcineurin inhibitors).
Corticosteroids. A short course of steroid tablets may quickly reduce inflammation in severe cases, with the hope of halting hair loss. However, side effects such as high blood pressure, diabetes, osteoporosis, and weight gain limit long term use. Sometimes steroid tablets are given as a bridge while waiting for another longer acting treatment to take effect (for further information, please see Patient Information Leaflet on oral treatment with corticosteroids).
Low dose hydroxychloroquine. Although slow to start working, this drug can be very useful in treating lichen planopilaris. Usually a minimum trial of 4-6 months is required to see whether the drug is effective. If helpful it may be continued for longer until the condition goes into remission. It is not certain how the drug works to stop hair loss. Very rarely, hydroxychloroquine may damage the retina (the layer of cells in the back of the eye that detects light and allows you to see) particularly in those needing treatment for more than 5 years. The risk of this is generally prevented by keeping the dose low, and limiting the overall length of time on this treatment. While you are taking hydroxychloroquine annual eye tests may be recommended (see Patient Information Leaflet on hydroxychloroquine for further information).
Immunosuppressive drugs. Several different tablets are used to treat lichen planopilaris by suppressing the immune system, with varying degrees of success. These are safer than taking steroid tablets in the long term, but do have side effects and therefore require close monitoring, with periodic clinical reviews and regular blood tests. It is not recommended for women to become pregnant whilst on these medications. The immunosuppressive drugs include azathioprine, ciclosporin, methotrexate and mycophenolate mofetil (please see the relevant Patient Information Leaflets for further information).
Biologic drugs (anti-inflammatory drugs designed to resemble normal human molecules). These have not been found to be helpful in this condition as yet.
Acitretin and isotretinoin are other drugs that have been used; however, isotretinoin is preferred because acitretin itself can cause hair loss. There are important risks concerning pregnancy when taking acitretin or isotretinoin. Please see the relevant Patient Information Leaflets for further information.
Tetracycline or doxycycline are antibiotics commonly used in the treatment of acne, but can also be used to treat lichen planopilaris. These drugs have few side-effects and do not require any monitoring by blood tests.
There is some evidence to show that the off-licence use (using a medication outside of the designated terms of its UK licence) of a diabetes drug called pioglitazone, might also be helpful in the treatment of lichen planopilaris. This is generally well tolerated, but there have been some safety concerns with long term use, including a possible association with bladder cancer.
Some people who have extensive hair loss from lichen planopilaris will choose to wear a wig or a hairpiece. These can either be bought privately or obtained through the support of the NHS with a consultant’s prescription (although a financial contribution is required). Your local hospital orthotic (surgical appliances) department can advise you on the range of hair pieces available on the NHS and recommend local suppliers.
Wearing a hat or scarf is another way of hiding hair loss.
Lichen planopilaris usually stabilises eventually and stops getting worse. Once it has been stable for a number of years it may be possible for permanent areas of hair loss to be removed or reduced in size by a small operation. Your doctor can let you know whether you might be suitable for such a procedure, but it is not be available on the NHS. Hair transplantation is another option that can be considered once the condition has stabilised, but is also not available on the NHS and unfortunately is not always successful if the condition reactivates.
Self care (What can I do?)
Join a hair loss support group.
Seek unbiased medical help and be sceptical of online solutions, especially those that offer instant, or quick, remedies.
Eat a normal healthy diet; no particular food has been linked to lichen planopilaris.
Consider using techniques to camouflage the problem such as wigs, hair pieces, powders, sprays and hair fibres that are matched to your hair colour.
Where can I get more information about lichen planopilaris?
Web links to detailed leaflets:
Link to patient support group:
Cicatricial Alopecia Research Foundation (US)
Other websites you may find helpful:
British Hair and Nail Society
Most other hair loss support groups focus on alopecia areata, but can offer useful advice for all patients suffering from hair loss.
Tel: (020) 8333 1661
For details of sources of materials please contact the Clinical Standards Unit (firstname.lastname@example.org).
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 APRIL 2013
UPDATED MAY 2016
REVIEW DATE MAY 2019