Frontal Fibrosing Alopecia: How soon does treatment take effect? How soon for results?

QUESTION

I was just diagnosed with frontal fibrosing alopecia and have just started treatment. How long will it take for me to see changes?

Answer

This is a great question. I answer this question for patients by first asking them if they are actually asking me “How long does it take to know if the new treatment is working?”

Clarifying this question is very important because patients who undertake a successful treatment plan may not notice ANY changes in their hair at all - which actually means the treatment is working. (This may seem obvious once stated but not always beforehand). Sometimes, a successful treatment will help regrow some hair and sometimes a successful treatment will simply help stop further loss (without regrowth). It’s really important that patients understand that both are potentially good signs.

There are two types of positive changes we look for when evaluating the success of treatment - one type is the “immediate” changes and the second is the “longer term” changes.

The immediate changes we look for after starting a treatment include reduction in symptoms (such as reduction in scalp itching, burning or tenderness) as well as reduction in scalp redness or the amount of scale. Some patients with scarring alopecia, especially those with frontal fibrosing alopecia, don’t always have any scalp symptoms to begin with so monitoring symptoms is not useful for this particular subgroup of patients. Even if the patient does not have symptoms, many do have redness or scaling and this parameter can be reevaluated at various intervals after treatment is started.

These so called “immediate changes” can be seen within a few days (ie rapid reduction in symptoms with some treatments) to a few months (ie reduction in scalp redness and scale within a few weeks of starting a treatment).

The ultimate test and most important test of how well treatment is working has nothing to do with symptoms and has nothing to do with what the scalp looks like - it simply has to do with what a photograph shows. However, to actually get a good sense of changes in  actual hair regrowth growth can take 6-12 months depending on how fast the FFA was moving originally before the treatment was started.

A patient who comes in for a 3-4 month visit and says to me “my scalp feels so much better” may or may not be enroute to better controlling their scarring alopecia. I share their enthusiasm but must advise them that we won’t fully know for 6-12 more months if we are truly winning this fight and successfully stopping the scarring alopecia.

Aggressive telogen effluvium in males: A common misdiagnosis of androgenetic alopecia

Question

I am a 23 year old male and have been diagnosed with fairly aggressive case of telogen effluvium. It started at age 21 and does not seem to be improving. I have been using biotin supplements recently but they too don’t seem to be helping. I am healthy and take no medications or drugs. What are your recommendations to stop the shedding?

Answer

Thanks for the great question. I think the most important consideration for you is whether, in fact, you have been given the correct diagnosis. I would need to see photos and know everything about your story and recent blood test results to tell you what diagnosis you have. However, androgenetic alopecia (male balding) needs to be considered in your case. In fact, I would state it even more boldly: in a situation like this with a 2 year history of hair loss in a 23 year old male, we need to prove that you don’t have androgenetic alopecia before moving any further. Once we deal with that, we can move on.

Far too many cases I see that are diagnosed as being telogen effluvium are misdiagnoses. Does telogen effluvium exist? Of course! In fact it is a common cause of shedding in patients with hair loss. Is 2 years of telogen effluvium common in a 23 year old healthy male? No, it most certainly is not.


Telogen effluvium happens from a variety of reasons. These include low iron levels, thyroid problems, stress, medications and illness. In most cases, they are temporary and once the trigger is identified and stopped or fixed- hair grows back. In your case we need to look for a trigger but the reality is that after two years of shedding in a healthy male, there may not be one. It’s still important to search.

Most cases of aggressive telogen effluvium in young males are in fact cases of aggressive androgenetic alopecia instead. It is commonly forgotten that androgenetic alopecia in males can be associated with shedding. In young males with strong genetics that is driving the balding process, shedding can be quite significant.

A male with shedding needs of course to have a full evaluation. One needs to know your history in precise detail. Underlying health conditions, medications, recreational drugs, sexual transmitted diseases, diet, eating disorders and psychological issues all need to be considered.

Young males with shedding need blood tests for CBC, iron (ferritin), thyroid (TSH) and vitamin D (25 hydroxyvitamin D). A hormonal profile is not useful for most males. Other tests could be relevant on a case by case basis including zinc, ANA, ESR and tests for sexually transmitted diseases but usually these are unnecessary.

If there is any doubt that exists, a scalp biopsy can be helpful in proving or disproving whether a patient has androgenetic alopecia - especially when so called “horizontal sections” are used by the pathology lab. Horizontal sections allow the pathologist to determine accurately something called the terminal to vellus (T:V) ratio. A terminal to vellus ratio of less than 4:1 indicates a high likelihood of androgenetic alopecia.

In summary, for a young male a diagnosis of “aggressive telogen effluvium” one must be absolutely certain that a diagnosis of androgenetic alopecia is not being missed.

Hair loss of the beard: What are the considerations?

Question

I have had beard alopecia areata/alopecia barbae since the age of 21, I am now 33. It began with one small bald patch under the chin and later in this period either simultaneously or after the bald batch grew back (which was within say the first couple of years) developed numerous very small bald patches throughout the entire beard (which on the cheeks appear slightly jagged) however are barely noticeable throughout. One bald patch larger than these very small patches developed on one cheek say 5 years ago and remains to this day. In summary, the condition has never dissipated however has remained static in its behaviour for a number of years to the present day.

My questions are as follows.

1. What is the likelihood of the condition progressing to other hair bearing areas? (I am aware of the study you quote at https://donovanmedical.com/hair-blog/beard-alopecia however this only followed up with patients after 12 months)

2. In the event that the condition did not progress to other hair bearing areas would hair transplantation surgery on the scalp (I have had male pattern hair loss since 2015/2016 and have been advised that it would be not until around age 35 when surgery could sensibly be considered - using FDA approved medications have only slowed down the condition rather than halted, or to any extent, caused its reverse) increase the risk of the condition (alopecia barbae) progressing to other hair bearing areas, especially the scalp?

Answer

The key here is …. what exactly is your diagnosis? It may or may not be alopecia areata and without actually seeing your scalp and beard up close myself, it would be a mistake to assume that it is. There are many mimickers of alopecia areata that need to be ruled out here - especially autoimmune cicatricial alopecia. If the areas are relatively unchanged for an extended period of time, the chances this is alopecia areata goes down.

Of course alopecia areata is on the list (and quite high up on the list of possibilities), but true classic alopecia areata of the beard does not stay unchanged over an extended period of time. You might consider seeing a dermatologist for expert review. A full review of your history and review of your hair loss pattern via dermoscopy is needed. A biopsy might be needed as well.

As far as chances of progression to other areas, it really depends on the precise diagnosis. If the disease has an immune basis, there is most certainly a chance of progression to the scalp. Hair transplantation of the scalp could be associated with an increased risk of the disease developing in the scalp - but it depends entirely on the precise diagnosis. For patients with isolated beard alopecia, my feeling is that there is about a 65-70 % risk over 10 years of alopecia areata being identified in the scalp. This too may be only one patch or may be more severe- but the presence of beard AA sets the stage for scalp AA to develop. Having a transplant is a small risk but only a small one. 2 % of the world will develop alopecia areata and so one generally expects 2 % of hair transplant patients to develop alopecia areata in their lifetimes. In 60-70 % of patients who do develop alopecia areata of the scalp in the years following their hair transplant regrowth happens quite readily with conventional treatments. Some do, however, have a more refractory course.

If the cause of the beard alopecia is actually a variant of immune based primary scarring alopecia (i.e. lichen planopilaris, folliculitis decalvans, lupus) or secondary scarring alopecias (sarcoid, scarring folliculitis etc), a hair transplant carries the risk of actually triggering scarring alopecia on the scalp. The concerns about proceeding with hair transplantation become magnified if the diagnosis actually turns out to be scarring alopecia.

All in all, alopecia areata is still at the top of the list here in the question that has been posed - but there are features of the story that are a bit unusual. You should be absolutely certain before moving on that this is alopecia areata and not something else. There is a risk over the next 10 years of alopecia areata developing on the scalp but in a majority of cases conventional treatments can help maintain the density. It largely comes down to understanding the risks and benefits (so called risk benefit ratio) …. and making an educated decision together with one’s dermatologist and surgeon. Making sure one has as much information as possible before moving forward with surgery is key.

Frontal Hairine Loss in a 48 Year old Black Female

Question.

I'm a black female 48 years old with what I believe is CCCA. I started loosing my hairline in 2014, however in an 18 month period I lost my entire hairline. For the last 14 months I've been treating my scalp with natural oils/home remedies. The hair loss have stopped. I think my condition could be inactive. If the e disease is in fact inactive, without any medical treatment, can my hair grow back on its own or will I need a hair transplant?

Answer

Thanks for the great question. As a physician who sees a lot of women with CCCA, your brief story shouts out to me one main message: this may or may not be CCCA that you have and if it is CCCA, one or more other hair loss conditions might be present too.

Let me begin. Central centrifugal cicatricial alopecia (CCCA) usually starts in the middle of the scalp or in the crown. CCCA does not usually start in the front like you described. However several conditions can affect the frontal hairline just like you described including traction alopecia, cicatricial marginal alopecia and frontal fibrosing alopecia. What’s a bit unexpected from your story is the complete loss of the hairline that you described. That certainly favours a diagnosis of frontal fibrosing alopecia over traction alopecia but of course I would need to see your scalp myself to answer that. An entity called cicatricial marginal alopecia is also on the list.

Your story is not a typical story of CCCA although of course you could have CCCA back in the mid-scalp too. Many black women with hair loss in the frontal hairline also have some degree of CCCA too.

What you really need now is a diagnosis. An expert dermatologist who treats a lot of patients with hair loss might be able to make the diagnosis without a biopsy but if you are thinking of hair transplants down the road a biopsy is going to be helpful to secure the diagnosis and also determine for you (and your doctors) just how active or inactive the disease truly is right now. My advice to anyone with a story like yours would be to consider a sample from the frontal hairline area and also from the crown. Remember that a biopsy always needs to have a hair in it so don’t biopsy any bare area as that is useless.

I’m suspicious about your diagnosis of CCCA but a few things about your story are more definite. First, it’s unlikely you’ll get spontaneous growth if you haven’t had growth since 2014. Depending on the exact and precise diagnosis, you still could get a bit of regrowth with treatment but likely only a bit. Second, you are probably not a candidate for surgery yet. Whether you become a candidate depends somewhat in the diagnosis but also on the activity level of your primary disease. I like to have patients take photos once they feel their disease is quiet... and if there is absolutely no change in hair loss after two years of photography then a hair transplant might be possible. If you feel your scalp has now become quiet, take a picture today and plan to compare that same picture in 2 years. If the two pictures look 100 % identical you might be a candidate for surgery. The longer answer as to whether you are a candidate for surgery actually depends on several factors.

In summary, your story suggests a diagnosis of frontal fibrosing alopecia or traction alopecia much more than it does CCCA. A biopsy could be extremely important for you and your treating physicians right now.

Minoxidil Itching: What are the important considerations and actions?

Question:

Is it possible that patients using minoxidil get itching because of the minoxidil and that this itching in turn causes more hair loss. I have tried both foam as well as liquid form, but still get itching. Can you tell me a prescription for minoxidil compounded in glycerin, water and ethanol.

Do you have any suggestions?

Answer

Thanks for the excellent question. Itching is often experienced by users of minoxidil. An accurate diagnosis of the precise cause of the itching is important for anyone because there are actually many causes of itching in minoxidil users. The top three considerations for you and your physicians to sort out are 1) Is minoxidil worsening an underlying seborrheic dermatitis? 2) Am I allergic or irritated by minoxidil? 3) Do I actually have another itching diagnosis that has been missed?

1) Is minoxidil worsening an underlying seborrheic dermatitis?

We’ll begin by talking about seborrheic dermatitis. This is a common condition and minoxidil can make it worse for some users. For patients with itching associated with minoxidil use, one needs a full review by their physician. I often advise patients to shampoo daily and add a few anti-dandruff shampoos to their routines. Ketconazole shampoo on Monday, Zinc pyrithione shampoo Tuesday and selenium sulphide Wednesday and then repeat. These should be applied for 60 seconds each application. Often the itching improves dramatically with these shampoos.

2) Am I allergic or irritated by minoxidil?

If there is a concern about allergy, I advise patients to apply the minoxidil twice daily to the inner forearm for 1-2 weeks and observe if an irritation or true allergy develops. This is called a “repeat open application test” (ROAT). Photos should be take daily and shown to a physician. A dermatologist can guide if a true allergic contact dermatitis has developed. Some patients are allergic or highly irritated by the ingredients in the formulation (such as propylene glycol in the liquid form) but some a truly allergic to minoxidil. A dermatologist can perform a standard patch test if doubt still exists after the patient performs and analyzes the ROAT.

It irritation to propylene glycol is suspected, minoxidil can be made up (compounded) in 20 % glycerin, 20 % water and 60 % ethanol. The fact that the patient in this question is still itchy with the PG free “foam” formulation makes it less likely the glycerin compounded formulation is actually going to help. As an alternative 2 % minoxidil can be used as it often has less PG.

3) Do I actually have another itching diagnosis that has been missed?

In situations like this, one always needs to keep an open mind that another itching diagnosis is present too or instead. This is not a common scenario but one can imagine a patient with lichen planopilaris (LPP) who was misdiagnosed as having AGA. Minoxidil can make active LPP worse.

In summary, there are many reasons to be itchy from minoxidil. Only in more severe cases does it cause hair loss. A methodical approach often reveals the cause and best options to reduce itching. Readers may also be interested in my previous article

I’m Itchy from Minoxidil: What Should I do?