The Four Patterns of Scarring Alopecia Treatment Responses: How do patients respond to treatment?

Can I stop my scarring alopecia or will it just get worse and worse until I’m bald? Do I need to use treatments forever?

I’m often asked if treatment for scarring alopecia will actually stop the disease or whether hair loss will just get worse and worse until all hair is finally lost. Does one have to use treatments forever and ever?

The answer is the everyone has a different response to treatment - but fortunately many patients can find treatments that help. It may not be only one treatment that is needed - and it may not be the treatment used on the first try that ultimately helps. But many patients can find successful strategies. These treatments may be needed forever for some patients - but certainly not everyone. In fact, most patients won’t be on the same treatment plan in 5 years that they are on at day 1. Some can stop at least some of them after a while - and still keep the disease quiet.

I often liken SCARRING ALOPECIA to a leak in a ceiling - and there are four types of scenarios that are possible. Let’s walk through these four scenarios together so we can better understand how patients with scarring alopecia respond to treatment.

To start, let’s imagine that I am sitting in my kitchen having breakfast and I see a pool of water on the floor. It soon becomes apparent that the water is coming from the ceiling. Drop after drop, drip after drip, I note that the water is coming from somewhere upstairs.

Let’s take a look at four different scenarios using our leaky ceiling analogy. We’ll compare these to how scarring alopecias can behave.

Scenario 1: It’s a short term issue and requires only short term treatment 

Frequency of this particular scenario: uncommon

Let’s continue with the leaking ceiling scenario. Sometimes we can figure out where the water is coming from and stop it. In this case, there ends up being very little damage to the floor below or the ceiling above. This might be a scenario whereby one discovers that a pipe burst upstairs and has now leaked through the floor to the downstairs. Shutting off the water and fixing the pipe completely stops the problem. We don’t ever come to understand why this pipe burst in the first place -  but we fix the problem and move on with other things. A few towels on the floor, some good mopping skills, and perhaps some minor repair of the ceiling returns things to as good as new. 

Some SCARRING ALOPECIAS are exactly like this. They cause issues only for the short term. Sometimes these scarring alopecias respond really well to treatment. In the case of lichen planopilaris, for example, it’s not completely out of the question (for a very small proportion of patients) that few months of topical clobetasol and a few  monthly visits to the doctor for steroid injections brings the disease to somewhat of a halt. Some of the hairs that were lost partly grow back because they were just injured and not completely destroyed. 

This scenario is not what we would consider the ‘norm’ or the ‘expected ‘ scenario. It does not occur in most cases but it can occur in a small subset.

But it does occur.

 Yes, some patients with SCARRING ALOPECIA can look like they have never had SCARRING ALOPECIA. These are the patients that share a story that they once developed a low grade SCARRING ALOPECIA that responded extremely well to treatment and this stopped the hair loss. Treatment brought the disease to a halt. Treatment can eventually soon be stopped in these cases after a relatively short period of time.

Scenario 2 and Scenario 3 are more common than Scenario 1 so let’s move on to these scenarios.

 

Scenario 2:  It’s a long term issue but with long term continuous treatment the issue can be kept quiet.

Frequency of this particular scenario: common

Let’s continue with the leaking ceiling scenario. Sometimes we can’t figure out what causes the leak and we can’t even figure out where the leak is coming from. There is a leak coming from the ceiling with dripping of water at a rate of 1 drop of water every 20 seconds. The plumber has been up in the ceiling many times looking for the source of the problem. It’s just not clear where this water is coming from!! Everyone has theories on the source of the problem — but none of these theories translate into any sort of meaningful help.

Krista, who lives down the street, thinks the house is possessed. Dave next door thinks the water leak is due to mold and if we hire a mold person like he once did the problem should be gone in no time. William from up the street thinks there is no problem at all and he himself has far bigger problems to worry about. Melissa feels the humidity is too high and a dehumidifier is all that’s needed for the house. Bruce thinks the house is too dry and the house is trying to get moisture into the house and a leaky ceiling is all a sign. Lisa says she has heard that ceilings sometimes do this for 1 year or so and then all leaking just stops.

To address the situation, we use a plastic bucket to collect water droplets so they don’t hit the floor. We are able to place a plastic bucket on the floor and directly under the water droplets. The floor has some damage already from the water stains and moisture but we can limit further damage with this strategy of using a plastic bucket. I need to keep the plastic bucket underneath at all times during the day and completely empty the bucket every 2-3 days. If I go away on vacation, I need to ask out neighbour to come in and empty my plastic bucket.  

I can even hide the issue somewhat. When guests come over to the house for a visit or for dinner, we put a special ceiling decoration on the ceiling and this traps water for a short time. We put a knitted rug over the area on the floor to cover the water damaged floor area. None of our visitors ever suspect much of a problem. Even after many years.

The water leak and ceiling dripping gets worse through the year. When the rain comes in the Fall season, the leak definitely gets worse. When the birds nest in the Spring there are a few weeks where it seems to get worse. When I am stressed and have less time to do my bucket emptying routine, the water leaks more on the floor. When neighbours next door have parties, the ceiling seems to leak more. I am sure of it. I know it’s all true - but everyone thinks my theories and stories are rather silly.

 After a while, perhaps many years, the leaking just stops. it’s just so strange.

Some SCARRING ALOPECIAS are just like this. We have no idea what causes them. We can treat some of them fairly well by continuous use of specific medications. In lichen planopilaris for example, there are cases where use of topical clobetasol, steroid injections and oral hydroxychloroquine seem to stop everything from getting worse. It keeps it quiet. If caught early enough in its evolution, we might even see some hair density improvements! After many years (ranging from 2 to 30), the disease may become quiet on its own and treatments can be stopped. This does not happen for everyone.

As soon as the patient tries to stop their medications (or leave them at home when they go on vacation), things just get worse. The patient is not able to reverse the patches of hair loss that have formed but they are fortunately able to prevent the disease from getting worse. When the patient goes out to social events, he or she can style the hair and use camouflaging fibers and hair spray and it looks okay. Nobody suspects there is an issue except a few people.

In this scenario number 2, the SCARRING ALOPECIA still seems to get worse at certain times of the year. It flares with heat and stress for some individuals. For others it flares with foods. Sometimes, but not always, it flares with vaccines or certain infections. Sometimes it even flares for no good reason.   Sometimes nobody even believes the patient when they say they know whaat causes their flare!

Scenario 3:  It’s a long term issue and requires multiple trials of treatments before something is found that finally works;  with long term continuous treatment the issue can be kept quiet.

Frequency of Scenario 3: common

Let’s continue with the leaking ceiling scenario. Sometimes the issue does not stop all that easily and needs new idea after new idea to eventually find something to stop the ceiling leak. 

This scenario is pretty common so let’s take a look at our leaky ceiling example.

For example, for some reason when I put the plastic bucket underneath to collect the water I notice that the plastic bucket also leaks. The plastic bucket in this example simply won’t hold the water. It’s so strange. Every plastic bucket I buy from the store also leaks water but when I use a metal pot from my kitchen it finally collects the water nicely and does not leak.  We don’t ever come to understand why every plastic bucket leaks water. The pot works - so we use the pot to collect water.

 After a while, perhaps many years, the leaking from the ceiling just stops. I put the pots away. I can repair the ceiling and floor if I want.

Some scarring alopecias are just like this. We try treatment 1 and treatment 2 and then treatment 3 and nothing seems to work. It’s like the treatment is invisible! Finally treatment 4 (or 5 or 6 or 7) works wonderfully and everyone wonders why that was not just the treatment started in the beginning.  Patience eventually leads to a solution.

 After many years (ranging from 2 to 30), the disease may become quiet on its own and treatments can be stopped. This does not happen for everyone. But a hair transplant or scar revision procedure may be possible if everything is quiet.

Scenario 4:  Nothing seems to help.

Frequency of Scenario 4: uncommon

Let’s continue with the leaking ceiling scenario.

Sometimes we can’t figure out what causes the leak and can’t find a good solution. The droplets come from the ceiling but for some reason when I put the bucket underneath to collect the water I notice that the bucket also leaks. It’s so strange. Even when I use a metal cooking pot from the kitchen instead of a plastic bucket, it also leaks. It’s so unexpected and so confusing! Every single collection device leaks!

The plastic bucket and pot probably help slow down the leaking of water on to the floor a bit …. but it certainly does not stop it.

Even towels are useless. The towels in the house are seemingly non absorbent so they can’t be used. The towels will not wick up water and seem useless.  

Eventually, there is a combination of things I use to deal with this ceiling leak but it seems challenging.

Everyone has suggestions for me which only adds to the confusion. Krista still thinks the house is possessed and offers to help in that regard. Dave still feels it’s clearly mold. Melissa still feels the humidity is too high and a dehumidifier is all that’s needed. Bruce still thinks the house is too dry and the house is trying to get moisture into the house and it’s all a sign. William is busy with his personal issues. Lisa says it’s probably going to just magically stop.

Some SCARRING ALOPECIAS are like this scenario 4. Fortunately it’s not common, but some SCARRING ALOPECIAS ARE very challenging to treat. We can slow it down a bit sometimes but the disease continues to happen. We use all the strongest of medications but nothing seems to help. It’s likely that the medications reduce the speed that hair loss occurs. But nothings stops it.

Summary and Comment

Let me begin this summary by pointing out that most patients with scarring alopecia will find helpful treatments. It may take a while to find that treatment, but they’ll find it. That’s the story for most.

Some patients with scarring alopecia find their scarring alopecia is really responsive to treatment. Some patients with scarring alopecia find their scarring alopecia is extremely resistant to treatment. some of this depends on the type of scarring alopecia we are talking about. I would estimate that:

a) 15 % - 20 % of scarring alopecias are fairly easy to treat and become quiet very very readily (scenario 1)

b) 30-35 % of scarring alopecias are responsive to a good treatment plan (scenario 2)

c) 45 % of scarring alopecias need a few trials of different treatments before finding a good plan (scenario 3).

d) 2-5 % of scarring alopecias are really tough to treat (scenario 4).

As one can see, most scarring alopecias are not completely resistant to treatment and many do slow down or stop with treatment. Sometimes we can even get improvement in the hair density too. This scenario 4 is not common but one needs to respect that some scarring alopecias are very challenging to treat. One must never claim to a patient that “you’ll be fine.”

Most of the time, the patient is helped with our modern treatment but there are extremely challenging cases of lichen planopilaris, frontal fibrosing alopecia, folliculitis decalvans, central centrifugal cicatricial alopecia, discoid lupus and dissecting cellulitis.

Fortunately, completely resistant or near resistant forms are not encountered very often - and we are able to help the vast majority of patients using evidence based treatment options.

HELPFUL RESOURCES

see: Treatment of Scarring Alopecia