Cicatricial Alopecia Research Foundation - Frequently Asked Questions

Our FAQ was last updated on September 6, 2011.

Definition of cicatricial alopecia

Cicatricial alopecia- a diverse group of rare disorders that destroy the hair follicle, replace it with scar tissue, and cause permanent hair loss. The hair loss may be accompanied with severe itching, pain and burning, and progress rapidly. In other cases the hair loss is gradual ,without symptoms, and is unnoticed for long periods. Cicatricial alopecia, also known as scarring alopecia, occurs in otherwise healthy men and women of all ages and is seen worldwide.

Click on the links below to view some of the most frequently asked questions about cicatricial (scarring) alopecia:

What is cicatricial alopecia or scarring alopecia?
Are there different kinds of cicatricial alopecia?
What causes cicatricial alopecia?
Who is affected by cicatricial alopecias?
Are cicatricial alopecias associated with other illnesses?
How are cicatricial alopecias diagnosed?
How are cicatricial alopecias treated?
Will my hair grow back?
What signs and symptoms should I watch for?
How should I care for my hair?

What is cicatricial alopecia or scarring alopecia?

The term "cicatricial alopecia" refers to a diverse group of rare disorders that destroy the hair follicle, replace it with scar tissue, and cause permanent hair loss. In some cases, hair loss is gradual, without symptoms, and is unnoticed for long periods. In other cases, hair loss is associated with severe itching, burning and pain and is rapidly progressive. The inflammation that destroys the follicle is below the skin surface and there is usually no "scar" seen on the scalp. Affected areas of the scalp may show little signs of inflammation, or have redness, scaling, increased or decreased pigmentation, pustules, or draining sinuses. Cicatricial alopecia occurs in otherwise healthy men and women of all ages and is seen worldwide.

Are there different kinds of cicatricial alopecia?

Yes, cicatricial alopecias are classified as primary or secondary. This discussion is confined to the primary cicatricial alopecias in which the hair follicle is the target of the destructive inflammatory process. In secondary cicatricial alopecias, destruction of the hair follicle is incidental to a non-follicle-directed process or external injury, such as severe infections, burns, radiation, or tumors.

Primary cicatricial alopecias are further classified by the type of inflammatory cells that destroy the hair follicle during the active stage of the disease. The inflammation may involve predominantly lymphocytes or neutrophils. Cicatricial alopecias that involve predominantly lymphocytic inflammation include lichen planopilaris, frontal fibrosing alopecia, central centrifugal alopecia, and pseudopelade (Brocq). Cicatricial alopecias that are due to predominantly neutrophilic inflammation include folliculitis decalvans and tufted folliculitis. Sometimes the inflammation shifts from a predominantly neutrophilic process to a lymphocytic process. Cicatricial alopecias with a mixed inflammatory infiltrate include dissecting cellulitis and folliculitis keloidalis.

Please see the sidebar photos for examples.

What causes cicatricial alopecia?

The cause of the various cicatricial alopecias is poorly understood. However, all cicatricial alopecias involve inflammation directed at the upper part of the hair follicle where the stem cells and sebaceous gland (oil gland) are located. If the stem cells and sebaceous gland are destroyed, there is then no possibility for regeneration of the hair follicle, and permanent hair loss results.

Cicatricial alopecias are not contagious.

Who is affected by cicatricial alopecia?

Cicatricial alopecias occur in both men and women. All ages may be affected, although primary cicatricial alopecia is not usually seen in children. Epidemiologic studies have not been performed to determine the incidence of cicatricial alopecias. In general, they are not common.

There have been a few reports of cicatricial alopecia occurring in a family. However, the majority of patients with cicatricial alopecia have no family history of a similar condition. Central centrifugal alopecia most commonly affects women of African ancestry and may occur in more than one family member. While it is possible to have more than one type of hair loss condition, non-scarring forms of hair loss do not turn into scarring forms of hair loss.

Are cicatricial alopecias associated with other illnesses?

In general, cicatricial alopecias are not associated with other illnesses, and usually occur in healthy men and women.

How are cicatricial alopecias diagnosed?

A scalp biopsy is essential for the diagnosis of cicatricial alopecia and is the necessary first step. Findings of the scalp biopsy, including the type of inflammation present, location and amount of inflammation, and other changes in the scalp, are necessary to diagnose the type of cicatricial alopecia, to determine the degree of activity, and to select appropriate therapy.

Clinical evaluation of the scalp is also important. Symptoms of itching, burning, pain, or tenderness usually signal ongoing activity. Signs of scalp inflammation include redness, scaling, and pustules. However, in some active cases there are few symptoms or signs and only the scalp biopsy demonstrates the active inflammation. The overall extent and pattern of hair loss is noted and sometimes photographed for future comparison. A hair "pull test" is performed to identify areas of active disease in which follicles are easily pulled out. The pulled hairs are mounted on a slide and the hair bulbs are viewed with a microscope to determine how many are growing (“anagen”) hairs and how many are resting (“ telogen”) hairs. In addition, if pustules are present, cultures may be performed to identify which microbes, if any, may be contributing to the inflammation. A thorough evaluation that includes all of these parameters is important in diagnosing a cicatricial alopecia and in identifying features in individual patients that will help the selection of therapy.

Diagnosis and treatment of cicatricial alopecia is often challenging. For this reason, it is helpful to be evaluated by a dermatologist with a special interest or expertise in scalp and hair disorders, and who is familiar with current diagnostic methods and therapies. A hair specialist who is experienced in the evaluation and treatment of patients with cicatricial alopecias may be found by contacting CARF's communications coordinator at: referrals@carfintl.org. Please provide your full name, address, and phone number.

How are cicatricial alopecias treated?

As mentioned above, primary cicatricial alopecias are classified by the predominant type of inflammatory cells that attack the hair follicles: i.e., lymphocytes, neutrophils, or mixed inflammatory cells. Treatment strategies are different for each subtype and each patient. Detailed treatment options are beyond the scope of this discussion and need to be determined by your dermatologist. However, certain general principals are reviewed below.

Treatment of the lymphocytic group of cicatricial alopecias including lichen planopilaris, frontal fibrosing alopecia, central centrifugal alopecia, and pseudopelade (Brocq) involves use of anti-inflammatory medications. The goal of treatment is to decrease or eliminate the lymphocytic inflammatory cells that are attacking and destroying the hair follicle. Oral medications may include hydroxychloroquine, doxycycline, mycophenolate mofetil, cyclosporine, or pioglitazone. Topical medications may include corticosteroids, topical tacrolimus, topical pimecrolimus, or Derma-Smoothe/FS scalp oil. Triamcinolone acetonide (a corticosteroid) may be injected into inflamed, symptomatic areas of the scalp.

Treatment of the neutrophilic group of cicatricial alopecias (folliculitis decalvans, tufted folliculitis) is directed at eliminating the predominant microbes that are invariably involved in the inflammatory process. Oral antibiotics are the mainstay of therapy. Topical antibiotics and anti-inflammatory medications may be used to supplement the oral antibiotics.

Treatment of the mixed group of cicatricial alopecias (dissecting cellulitis, folliculitis keloidalis) may include antimicrobials, anti-inflammatory medications, isotretinoin (starting dose must be small). Infliximab may be helpful in treatment-resistant dissecting cellulitis.

You should discuss any treatment with your dermatologist, who will also explain potential side effects, as well as laboratory tests that are needed before starting treatment and sometimes are monitored during treatment.

Your dermatologist will explain potential side effects as well as laboratory tests that are needed before starting some treatments, and sometimes are monitored during treatment. The course of cicatricial alopecia is usually prolonged. Treatment is continued until the symptoms and signs of scalp inflammation are decreased, and progression of the condition has been controlled. In other words, itching, burning, pain, and tenderness have cleared, scalp redness, scaling, and/or pustules are no longer present, and the hair loss has not extended. Unfortunately, cicatricial alopecia may reactivate after a quiet period and treatment may have to be repeated.

Surgical treatment for cosmetic benefit is an option in some cases after the disease has been inactive for one to two or more years. Hair restoration surgery or scalp reduction may be considered in these instances.

Will my hair grow back?

Hair will not regrow once the follicle is destroyed. However, it may be possible to treat the inflammation in and around surrounding follicles before they are destroyed, and for this reason it is important to begin treatment as early as possible to control the inflammatory process. Minoxidil solution or foam (2% or 5%) applied twice daily to the scalp may be helpful to stimulate any small, remaining, unscarred follicles. The progression of hair loss is unpredictable. In some cases, progression is slow, and in other cases progression can be rapid and extensive. Usually there is sufficient hair remaining to cover the affected scalp areas; in relatively few patients the hair loss is more extensive and requires a hair piece.

How should I care for my hair?

Hair care products and shampoos are generally safe as long as they are non-irritating to the scalp. Your dermatologist may recommend specific shampoos and products to decrease scalp symptoms, scaling and inflammation and will recommend frequency of their use. Hair pieces, wigs, hats, and scarves are all safe, will not aggravate your condition, and may be used freely.

Disclaimer

CARF does not endorse any of the medications, treatments, or products mentioned in this website. Please consult with your physician before considering any of the drugs or treatments.