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Question of the Month - Feb 2017

Should I take an oral medication for my cicatricial (scarring) alopecia?

Lynne J. Goldberg, MD
Professor of Dermatology and Pathology
Boston University School of Medicine

This is a very personal decision. The answer depends on several factors, including the diagnosis, the activity of the disease, the extent of the hair loss, the severity of symptoms, and the comfort level of both the provider and patient.

Some conditions are more easily treated than others. It is very important to keep in mind that treatment does not regrow hair that has been lost due to scarring. The goal of treatment in scarring alopecia is to control symptoms such as itching and burning, and to slow further hair loss

Some patients can be easily controlled with a topical medication. Such patients often have little to no symptoms, and their hair loss is mild and slowly progressive. Many patients prefer topical medications even if their hair loss is severe, either because they are taking other medications and are concerned about medication interactions or they have experienced or are concerned about medication side effects. The age of the patient and co-existing medical problems are important variables. No two patients are alike.

Other patients are very upset about their hair loss, regardless of extent and activity. This group prefers to be very aggressive about their hair loss, and is willing to use topical and oral medications as well as other modalities such as intralesional injections. Some patients are on more than one oral medication. Sometimes these patients are monitored with blood tests to ensure there are no issues with blood counts or liver function.

Many patients fall in between these two groups. In deciding whether or not an oral medication is suggested, your provider will take into account the factors above. There are few studies as to success rates in treatment of scarring alopecia, and existing studies are not standardized. Thus, it is difficult to give exact percentages on probability of improvement. Some patients will experience immediate benefit, while others will worsen regardless of what treatment plan is followed. One needs to balance the risk of the medication with the overall impact of the hair loss. Some oral medications are very well tolerated. If one remains unsure about whether or not to start, your primary care provider or any clinician who knows you best can be a good sounding board to discuss the options provided by your skin care provider.

Question of the Month - Nov 2016

What medications are used for scaring alopecia and for how long?

Lynne J. Goldberg, MD
Professor of Dermatology and Pathology
Boston University School of Medicine

This is a tough question to answer. Because there are few studies on the treatment of cicatricial alopecia, there is no single correct response. There are no medications approved by the Food and Drug Administration for scarring alopecia. Selection of both topical and oral medications is based on which disease you have, how active it is, the severity of symptoms, the extent of the hair loss, how rapidly it is progressing, the experience and comfort level of the provider, and your comfort level as a patient

Initial or first line therapies are chosen because they are efficacious and have few side effects. Topical therapies include various steroids, usually in liquid, gel, foam or shampoo formulations, as well as non-steroid products such as calcineurin inhibitors (tacrolimus and pimecrolimus). Because tacrolimus is only commercially available as an ointment, it is sometimes formulated specially (“compounded”) in a lotion form. Topical therapies can be used alone, but are often combined with an oral agent.

First line oral therapies are hydroxychloroquine, doxycycline, and finasteride. Second line therapies include mycophenolate mofetil, cyclosporine, and pioglitazone. Duration of treatment will depend on response; if the disease becomes less active, the medication can be reduced in dosage or stopped completely. Patients may take oral medications anywhere from 3 months to several years. Some medications require periodic monitoring of lab tests. The goal of treatment is to alleviate symptoms and stop the progression of the hair loss. Sometimes patients need go on and off medications as their symptoms dictate.

Support groups can be very helpful for patients to gain insight into their condition and share experiences. Check the CARF website (CARFintl.org) for a support group near you, or speak to your provider about starting one in your area.

Question of the Month - Oct 2016

How important is it to successful treatment to have a diagnosis of which cicatricial alopecia one has? I have had 3 biopsies over 16 years and still do not have a specific diagnosis.

Lynne J. Goldberg, MD
Professor of Dermatology and Pathology
Boston University School of Medicine

I chose this question because it raises several important points. The first is that cicatricial alopecia is difficult to diagnose clinically. Signs of scarring include a smooth scalp surface, redness, scale and pustules. Different diseases share these features, which makes a biopsy an important diagnostic tool. However, interpretation of the biopsy can also be very difficult.

Biopsy findings change over time. Initially there is inflammation around the follicle. Over time, the degree of inflammation may lessen, and there is more scar formation. Thus, a biopsy of a late lesion may not yield a specific diagnosis, and sometimes a repeat biopsy of a more active area is required. If the alopecia is “burned out”, or inactive, even multiple biopsies may not help. In such cases, an evaluation by a clinician specializing in hair loss and review of the slides by a dermatopathologist specializing in alopecia may help to correlate the clinical and histologic findings and arrive at a diagnosis. Despite this advanced level of care, sometimes a specific diagnosis cannot be achieved.

Some first line treatments of cicatricial alopecia are indicated for many of the diseases, and can be used even when there is not an exact diagnosis. If the disease remains active, hopefully a biopsy of an area of activity will be diagnostic, as second line therapies tend to be more disease specific.

There is much that we do not know about cicatricial alopecia. Please consider helping CARF support ongoing research by making a donation today!

Question of the Month - Sep 2016

What is Cicatricial Alopecia?

Lynne J. Goldberg, MD
Professor of Dermatology and Pathology
Boston University School of Medicine

Hair shafts, or what we know as our hair, are produced by hair follicles located deep under the scalp surface. These are fixed in number at the time of our birth, and sadly no new ones are produced afterwards. All of our hair shafts undergo cycling and are shed periodically after several years. By the time a hair shaft is shed, the hair follicle is already producing a new hair shaft to replace it.

The term “alopecia” means hair loss. Alopecia is caused by many different diseases and conditions, and is typically classified into non-scarring and scarring (cicatricial). Cicatricial alopecia can be secondary, where the hair follicle is an innocent bystander in an unrelated condition (such as a surgical scar), or primary, as discussed below.

Non-scarring alopecia occurs when the hair cycle is disrupted, either causing an abnormal amount of hairs to be shed, or delaying the production of a new hair shaft. There are many different types of non-scarring alopecia, each with its own clinical findings. The most common type is genetic (male and female pattern hair loss), which produces a progressively smaller hair shaft with each hair cycle. These changes produced a decrease in hair density without any damage to the hair follicle.

Primary cicatricial alopecia is entirely different. In this group of conditions, inflammatory cells in the scalp surround and eventually destroy hair follicles. This process often causes discomfort such as itching and burning, and leads to bald patches. There are several different diseases that cause scarring alopecia, classified by which inflammatory cell is present. Please check out the “Cicatricial Alopecia FAQ” section under the “For Patients” tab on the website for more information.

There is much that we do not know about cicatricial alopecia. Please consider helping CARF support ongoing research by making a donation today!

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