Welcome to the Don't Be Rash Pediatric Dermatology
Podcast, the owner's manual for your kid's skin.
I'm your host, Dr. K, board -certified pediatric
dermatologist and father of two boys. I'm here
to chat with you to promote dermatological education
and improve skin health in our children everywhere.
Let's get started. Welcome to Don't Be Rash,
the pediatric dermatology show, coming to you
from beautiful downtown historic Bethlehem, Pennsylvania.
I'm your host and board -certified pediatric
dermatologist, Dr. Andrew Krakowski. On today's
show, we're going to introduce you to a condition
that, for me at least, has been one of the most
difficult to manage, and not just because it
can be a beast to treat clinically, but also
because of what it can do to a patient's self
-confidence and how these patients relate and
interact with the social world around them. More
specifically, we're discussing "Alopecia Areata" -
a condition that causes hair loss in both children
and adults. Alopecia areata is an autoimmune
disorder in which the body's immune system mistakenly
attacks its own hair follicles, leading to this
very special kind of hair loss. Joining us today
as our guest co -host is Dr. Brittany Craiglow.
Dr. Craiglow is a nationally recognized alopecia
areata expert and pediatric dermatologist who
practices in Fairfield, Connecticut, and holds
a faculty position at Yale School of Medicine.
She's been a longtime champion for patients living
with alopecia areata, and we're so very excited
to have her here with us today. Welcome, Dr.
Craiglow. What, may I ask, inspired you to get
involved, specifically, with alopecia areata? Well,
first of all, thanks so much for having me. It's
really exciting to be talking about this important
disease. You know, it's funny, I actually have
a vivid memory of being a resident and having
a conversation with one of my mentors, Dr. Jean
Bologna, who asked me, "So, Britt, what are you
going to do with your life?" And I said, "You know,
what do you mean? What am I going to do? I'm
going to be a pediatric dermatologist." And she
said, "Yeah, but what are you going to do?" And
I said, "Well, I'm not sure, but I'm definitely
not doing hair loss." No, this is anybody who's
listening, maybe in training, this is your, your,
uh, advice to never say never because you never
know where the wind is going to blow you. And,
you know, this all really just happened very
organically. Um, it was, I think about, 11 years
ago now that my husband who's also a dermatologist
and I published a paper about treating a patient
with alopecia areata with a medicine called tofacitinib
which is a Janus kinase or JAK inhibitor and
he amazingly had complete regrowth of his scalp
hair and that just sort of kind of kicked off
this cascade where we realized wow this is this
is a big deal. We need to do a clinical trial.
So we did a clinical, you know, a small clinical
trial. We started seeing patients, you know,
eventually I started treating adolescents and
then some pre -adolescents and it just kind of
took off. And, you know, I have to say, I really
love it and am, you know, very grateful that
this happened. I think I... love medicine largely
because of their relationships with patients
and families. And this is a disease that, you
know, the relationship is really important and
it's long -term, you know, a lot of dermatology
is kind of transient. And this is something where,
you know, I have patients now who I've been treating
since, you know, the first kids I ever put on
JAK inhibitors were in middle school at the time,
and now they've graduated college. And that is
really fun and really meaningful. Yeah, this
is a topic near and dear to my heart. Just this
past week, a teenager, I saw him when he was
a pretty young teenager and total hair loss.
We had him on a medicine. We'll talk about which
one it was a little bit. And he got about three
quarters of the way regrowth. And man, you could
just see his entire demeanor change. Everything
picked up. He was looking like a happy guy. And
then I saw him back for what I thought was going
to be a routine follow -up, still on the medicine,
lost all of his hair. He just had a total failure
and was back to square one. Actually, probably
a little worse. He had some eyelash involvement
at that point, eyebrow involvement. And we wound
up putting him on a different JAK inhibitor,
one that's now approved, which we'll talk about,
Litfulo. He was doing pretty good, a little slower
than I was hoping. And I just saw him back. for
a six month check in. And I have to tell you,
this guy has the most luscious locks. He's growing,
he has grown an entire. beaver pelt on his head
it is the thickest most luxurious hair and he
- just like i would do if i were in his case - he
has no plans to cut this hair anytime soon. He
is rocking it. He looks like somebody stepped
out of the 70s uh what's that matthew mcconaughey
movie "All right, all right, all right" - Dazed and
Confused. He looks like he stepped right out of
that and he was beaming ear to ear. He's had his
hair completely back for about three months now
And his entire life has changed. He's going off
to college. And he just couldn't feel any better
about himself. So I really ran the entire gamut
of emotions with this kid. And the best part
about it was he knew what I wanted to do when
I was in the room with him. And he's like, "Go
ahead." I said, "Are you sure?" "Yeah, go ahead."
And he had me take my hand and just go through
his hair. It was so awesome. I mean, it is as
sort of cliche as it is. It really is a journey.
And I think, you know, you can see that even
with treatment, it's not necessarily, it's not
over actually. And we can still see flares. And
I think even in patients for whom treatment is
really successful, there's often this worry,
you know, that maybe this isn't real or. Maybe
at some point, you know, I'm going to start to
get patches again. I really do think it's the
experience of losing hair, having a child lose
hair is often traumatic, which I think if you
didn't know the disease or didn't know anybody
with it, you might think, well, that sounds,
that's a little extreme, you know, but if you
talk to anybody who's lived it, they will say
yes for sure. And then there is kind of this
PTSD component sometimes because, you know, things
are going along pretty well. And then all of
a sudden. boom, you know, you're going backwards,
like you're a patient. And that, I think it's,
I mean, it's devastating and it's all just, it's
very complicated. Yeah. And, and, and not, not
exceptional that you would expect to never have
this happen to you, right? I mean, this can happen
to anybody. Right. It's, it's actually pretty
common, you know, up to 2 % lifetime incidence.
That's, that's quite high for an autoimmune disease.
And, you know, so often I'll say to kids, there
may be another child even in your school who
has this, but you might not know because they
have really mild disease and it's covered, you
know, by their hair. Maybe they're on treatment
or maybe they're wearing a hair piece. And I
think it's important for kids to hear at least
that they're not the only person in the world
because that's kind of what you feel like. But
that this happens to other kids and, you know,
sometimes. showing photos of professional athletes
or celebrities who have experienced alopecia
areata can be helpful, I think, to patients and
families just to understand that they really
aren't alone. Well, for the audience listening
out there, talk a little bit about what alopecia
areata looks like. Yeah, it's a really heterogeneous
disease. So alopecia areata can... can be anything
from a very small, you know, dime -sized patch
of hair loss. Classically, it's what we call
smooth alopecia, so completely devoid of hair.
But in reality, that's not always the case. And
that can turn into many patches in some patients.
And in a, you know, not an insignificant proportion,
that can actually become complete scalp hair
loss or complete scalp eyebrow eyelash body hair
loss and historically we've used the terms "Alopecia
Totalis" to describe complete scalp hair loss
or "Alopecia Universalis" to to describe complete
loss of all body hair. But those of us who do
a lot of this are kind of trying to move away
from that just because even among dermatologists,
we don't exactly agree on those terms. And so
it's really, it's all "Alopecia Areata." It's just
a spectrum of disease. And I think importantly,
patients who are kind of on the milder end or
in the middle are often, again, very worried
that tomorrow's going to be the day they wake
up and they're the person on the severe end.
And so it's... You know, Jerry Shapiro, one of
sort of the greats of hair loss, often says the
only predictable thing about it is that it's
unpredictable. And I think that, you know, for
us is. treating physicians is really tricky because
everybody, you know, this is kind of the epitome
of feeling out of control as a parent or as a
patient. And it would be really nice to have
a roadmap and we just don't. Right. And you mentioned
scalp, eyebrows, eyelashes, rest of the body
for young men can affect the beard as well. Got
a couple of patients that we're treating really
without. any scalp involvement. It's just the
beard. And you would think, geez, maybe you just
shaved the beard and never noticed this. But
for whatever reason, that's important enough
that we're going through that journey together
and trying to come up with some solutions to
that. Are there predictors clinically when you
walk into the room? A, can you tell, geez, I
think this person has alopecia areata. What are
you doing on your exam that's specific looking
for? clues that this is alopecia areata and then
what clues might you have available to you as
a clinician that give you some idea of where
this is going is this going to be a is this going
to be a severe course or is this something i
might be able to to eke out pretty pretty easily
over a couple of months with some topical medicines
rather than say for example a systemic one right
well i would say For the most part, alopecia
areata is a pretty straightforward clinical diagnosis
because oftentimes people present with these
classically round patches of smooth alopecia.
There are some cases, I think especially... early
on in disease where it may be diagnosed or in
patients who have more of what we call diffuse
alopecia areata where they have more of a generalized
thinning rather than actually discrete patches.
And that I actually think is probably more common
than we think. I see it not infrequently, especially
in young children. And I think sometimes it's
so subtle that it just gets missed. And in those
kids, tricoscopy can be very helpful when there
are certain things and basically for those not.
medical people listening that's just basically
taking a magnifier and looking at the scalp and
looking at the follicles up close and there are
certain features of alopecia areata that you
know that we can see sometimes and so you know
every once in a while we might need to do a scalp
biopsy but i would say that's really really uncommon
especially in kids i think in adults sometimes
we have more mimickers you know worrying about
scarring hair loss etc um and in kids you know,
usually we don't need to do that. And in terms
of clinical features, you know, there are some
things that have been associated with, often
it's... called sort of worst prognosis, or we
say that, but that doesn't really mean lack of
response to treatment, just more chronic course.
So things that kind of ring the alarm bells or
raise the antennae are very early age of onset,
so like under five or six. More severe disease
at the onset, so kids do come in and, you know,
they're having rapid shedding and missing 50%
of their scalp hair over the course of a couple
months. Kids who also have eczema. So we see
eczema or atopic dermatitis in about 30% of
kids who also have alopecia areata. That can
be associated with a more chronic course. Patients
who have nail involvement. So fingernails can
also be affected as a keratinized structure.
And sometimes we see it's very, very subtle,
but little pitting, little dots in the nails.
And then in some patients, it's very severe,
what we call trachonychia, which is a very
sort of rough sandpaper type look. to the fingernails
and it can affect all of them. And that, you
know, cosmetically can be really upsetting, but
also functionally it can be problematic, right?
And so I think most of these things are kind
of intuitive in that, you know, if the worst,
the scalp hair or the worst, you know, the involvement,
the more likely it is to be chronic, the younger
the age of onset. So those are, you know, if
I see a patient with those things, I am. potentially
thinking about being a little bit more aggressive
at the outset, maybe seeing them back sooner.
But it's tough, right? Because somebody could
have all of the above, have one patch in their
whole life, and then that's it. And then somebody
could have none of those things and have very
severe hair loss. Another thing I didn't mention
is a first degree relative with alopecia areata.
So that also associated with greater likelihood
of severity and chronicity. Do you as a clinician
use... the classic "ophiasis" pattern as a prognostic
indicator anymore, or is that sort of out the
window? Yeah, well, no, for sure. "Ophiasis" refers
to a pattern that is actually pretty common.
It's a sort of a band -like distribution on the
nape of the neck and then up and over the ears.
And this is... traditionally sort of more difficult
to treat and so yes you know it's interesting
we even have patients who have you know complete
scalp hair loss and we treat them and they grow
everything back except for that ophiasis pattern
it's really interesting because we have no idea
why that area is commonly effective and you know
more stubborn or recalcitrant to treatment but
but for sure that's something that if we see
it we're thinking okay we may need to do a little
bit more than we need to do for the the patient
who has one little patch. I just, my own personal
experience is I just tend to see kids with that
pattern. Yeah, it's very common, I think. It's
not uncommon. So to me, it's not that helpful.
It's more what I see than not, if that makes
sense. What's the opposite, the "Sisaipho?" Yes,
which actually, you know, if you look at the
literature, not super common, but we do, you
know, we do see it. And, you know, I think these,
it's sort of nice. in a way to have these names
if you're, you know, a splitter, but it's all,
it's all the same thing really. And I think most
patients, no matter how, how much or how little
hair loss they have, they want all of their hair
back. Right. Honestly, the way I use the ophiasis
pattern is mostly to as an additional documentation
for when I go to knowing that I'm going to have
to argue with an insurance company down the line
about treatment. And I can say, well, here's
100 articles that suggest this is going to be
a tougher treatment. Otherwise, I don't really
put any stock in it whatsoever. When you walk
in the room, do you do any sort of hair pull
tests on these patients? And if so, how are you
using that? What are you expecting to find in
alopecia areata? Yeah, typically I do, you know,
I'll tug on if a patient just has patchy disease,
kind of tug on hair at the periphery to see if
that's, you know, if it's active. Patients with
shedding, I think the hair pull is really important
to kind of get an idea of is this, you know,
what's, how much time do we have here? How urgent
is this? And, you know, we see kids sometimes
where, you know, they are shedding at such a
massive rate that you just run your fingers through
there. hair and, you know, you get a handful.
And in that patient, like time is of the absolute
essence because, you know, even no matter what
you do, it's going to get worse before it gets
better. And I think that's, you know, something
that's very difficult about treating alopecia
is that there's this lag always with treatment
and that, you know, anything we're seeing happening
today was really probably set in motion several
weeks, if not more. ago right and so that means
that any treatment any intervention we make we're
going to have to wait you know in many cases
months actually to see if it's going to be effective
and I think that can be really hard but is an
important thing to talk to patients and families
about just so that they have expectations about
you know, that are appropriate. So I often will,
I think it's important to explain the disease,
right? And explain what's happening. I need to
reassure kids that they're okay and they're healthy.
And often I, especially the little kids, I'll
tell them that. Their immune system is kind of
trying to be a superhero. It's going after something
it really doesn't need to do. But, you know,
the point of treatment is we're not really growing
hair per se. We're trying to get rid of that
immune system activation. making it so the hair
can't grow. So first we have to get rid of the
immune cells. Then the hair cycle has to reset.
Then the hair has to start to grow, which we
know it doesn't grow right from the tippy top
of our scalp, right? And so all of that just
really takes time. And I think, you know, as
long as you explain that, you're probably not
going to get a call a week into treatment. You
know, we're not seeing anything yet. No, that's
a great point. A lot of this is anticipatory
guidance and you can't predict the future. I
totally agree. You mentioned One of the tools
that I've been better at using in the last five
to seven years of my career has been a dermatoscope.
And is that a tool that you are finding yourself
using for these patients? And if so, what are
you looking for? How are you using it? Yes, for
sure. So, you know, I think I often say that.
you know, dermoscopy of pigmented lesions, I'm
not the best at. There are so many different
patterns and things to learn about. But with
hair, there's sort of a finite number of things
that you're looking for, right? So I think it's
really helpful when you know the diagnosis to
pull out the dermatoscope and look, right? Because
then you can start to see some of these things
that we... you know, that we read about like
open hair follicles, which sometimes will look
like yellow globules in patients with fair skin
types, exclamation mark hairs, which are these
tapered hairs. Sometimes we see broken hairs.
These are all things that can kind of be helpful
in making the diagnosis. So yes, for sure. I
basically always do it. And again, I think I've
gotten more comfortable over time as I've seen
normal over and over again and abnormal over
and over again. So that when you have that patient
who has maybe really mild diffuse alopecia areata,
you can look around and, oh, well, there's an
exclamation mark hair. You know what? I think
we're dealing with this. And we may save them
a biopsy, which we know in pediatric patients
especially can be really hard. Can you explain,
since you brought it up, the exclamation mark
hair phenomenon? What are you looking at? This
is a sign of active disease. These are hairs
that the immune system is really... getting revved
up about and trying to kind of get rid of, if
you will. So they look like little exclamation
points with tapered hair on the scalp side and
then distally a little bit wider. So they're
just, they're a pretty good sign of active disease.
How about black dots? Yeah, so we see black dots.
I mean, black dots are tricky because they can
be seen in Lots of, you know, different hair
disorders, you know, like tinea capitis. And
sometimes we'll see them in hair pulling. And,
you know, those are for sure always, I wouldn't
say always, but, you know, they're going to be
on your differential diagnosis. So, again, I
think the ones that are kind of more classic
to alopecia areata tend to be more helpful. But,
again. Usually you're going to be able to make
the diagnosis from three feet away, right? But
it's still useful, I think, even when you know
what it is, to have a look so that if you're
not really sure, maybe that can be helpful in
the future. How does scale, the presence of scale,
change your differential diagnosis, your list
of what this could be? Yeah. So, you know, we
always tell the residents if it's scaly, scrape
it. And tinea capitis for sure, you know, is
usually scaly. But I will tell you alopecia areata,
sometimes, especially very acutely, you can see
scale and you can sometimes see erythema or redness.
And so this does not necessarily mean it's not
alopecia areata. You know, there are certain
types of scarring hair loss, which are. very
uncommon in children, lichen planopilaris where
there'd be scale, but it's right around the hair
follicle. We also have scale in seborrheic dermatitis,
which lots of kids just in general have. So you
could have two things at once. Every teenage
boy. You know, absence of scale, I think, is
usually a good, you know, in the for alopecia
areata category, but presence doesn't mean it's
not alopecia areata. But for sure, we want to
rule, you know, I see kids sometimes who, you
know, they've been called tinea capitis initially.
I think that's, you know, we see that a lot from
pediatricians or, you know, sort of first presentation
because it's, you know, common things are common,
right? And that's going to be the most common
diagnosis. And especially if you're, you know,
you're not seeing this a lot, it's, you know,
probably easy to think that it's that initially.
For tinea capitis or ringworm in the scalp, I
want to feel a lymph node. And I want a culture
or at least I want to scrape the fungus off the
scalp and find it in my microscope down the hall.
But even sometimes if I don't see it under the
microscope, I don't trust myself enough to say
100% I'm right. I'll still do that fungal culture
two to four weeks back, get a negative or find
that I... actually did detect some fungus and
change the diagnosis but uh i'm not i'm not happy
calling something tinea capitis without without
at least a thorough comprehensive workup on those
kids yeah we i like to say we're doctors so we
ought to like data i like it i like it now you
mentioned that alopecia areata a little bit harder
course when it's associated with atopic dermatitis
or eczema what are some of the other conditions
that you see running with alopecia areata that
might have an impact on either finding it or
having it be more prevalent popping up? Yeah,
so for sure. Far and away, eczema is the most
common comorbidity. In general, most patients
with alopecia areata are healthy. It is the only
thing that they have. And I think this is important
because I think especially families feel like...
there's gotta be something wrong. This must be
because of X, Y, Z, which you completely understand
because it is kind of wild that, wow, this can
just happen out of nowhere. And it's like, yeah,
this is what autoimmune diseases do. So most
kids are completely healthy otherwise. Often
there is a family history, sort of a sprinkling
of autoimmunity in the family. Somebody has celiac
disease, grandma has rheumatoid arthritis, maybe
someone has Hashimoto's. or other type of thyroid
disease. But again, not always. There can be
a kid with none of these things, right? So I
think we've seen some papers in the last several
years about what blood work should be checked
in patients. And really, in a healthy kid who
has... no concerning signs on review of systems
and no first degree relative with thyroid disease,
you actually don't need to check any labs. And
so I think sometimes, you know, it's done because
it is sort of, it makes everybody feel a little
bit better, right? To be sure nothing is wrong.
Sometimes maybe you'll catch a low vitamin D
or something, but importantly, that's not. why
the patient has alopecia areata, right? Sometimes
I think the laboratory investigation is this
family see as, you know, trying to figure out
the cause, and it's not. It's more to screen
for things that can go along with alopecia areata.
So, you know, in general... a lab workup isn't
needed unless there's something concerning. You
know, caveat would be patient with first degree
relative with thyroid disease, patients with
trisomy 21 should also have a TSH check. Typically
they are seeing an endocrinologist anyways. And
then for sure, if something is concerning, you
know, that the child is not growing, they're
having a lot of abdominal pain, you know, there
are certain things that, you know, are going
to make us check some labs, but otherwise it's
not necessary. And I would say. Please do not
check an ANA because a lot of these patients,
so an ANA is anti-nuclear antibody. It's sort
of a kind of a marker of tendency toward autoimmunity,
but lots of people have a positive ANA and have
no. you know, nothing going on with them. And
the problem with checking it is in this population,
it's more likely to be positive. And then all
of a sudden the patient is getting referred to
rheumatology and, you know, having all these
labs done when they really don't need to. So
again, I think it can be hard, but really we
don't need to be doing some wild workup for these
kids. And that extra layer of workup delays accurate
diagnosis and probably most importantly, potentially
delays early management, getting there fast with
some of the medicines that we'll talk about shortly.
And yeah, you're just going down a rabbit hole
you don't need to. One thing I've noticed over
the last couple of years, specifically, I think
you'll know what years I'm talking about, has
been after COVID. I've seen a tremendous, I don't
know if it's just a selection bias or maybe I'm
paying more attention to it, but either because
of covid infection itself or after actually quite
a number of cases after what parents have said
this is this happened a month or two after the
vaccine and you know obviously i'm a huge proponent
as a pediatrician of vaccines but i'm also a
- and I would say even behind the scenes, the Department
of Justice, which I didn't know about until they
asked us to do this, they have a vaccine program
where you can champion the vaccine and say, is
this case of alopecia areata that they're presenting
to you, is this likely or unlikely to be associated
with the vaccine? And for whatever reason, I've
just seen quite a spike in those cases of alopecia
areata thought to be. timely, temporally associated
with either COVID infection or the vaccine when
we were giving it to everybody? I don't know,
is that an experience? Yeah, I mean, so this
is, you know, really complicated. And I think
that the data is mixed. You know, if you think
back to, you know, late 2020, 2021, 22. everybody
was getting COVID or vaccinated or boosted like
all the time, right? And so the chance that a
patient can look back a couple of months and
have one of those things have happened is going
to be pretty high, right? So there's going to
be a lot of correlation there. You know, I think
that... What we do know, though, is that COVID
is a very immunogenic virus, as is the vaccine.
It really revs up our immune systems. And interestingly,
some of the pathways that get revved up are sort
of similar to alopecia areata. So, you know,
I think my feeling about kind of the triggers,
which people get very fixated on, understandably,
is I think that... So probably it's never one
thing. It's probably multifactorial. We know
you have to have this genetic predisposition,
but in some cases may this be the thing that
kind of tipped the scales. Sure. So, you know,
interestingly, one of the treatments we have
for alopecia areata called baricitinib, or the
brand name is Olumiant, is actually approved
for the treatment of COVID in severe hospitalized
patients in combination with an antiviral medicine.
So again, kind of showing that these immune pathways
are really, they overlap and shared. And so it's
not a huge stretch to think that the virus and
or the vaccine may, you know, play a role in
the onset in some patients. Tell me if I'm wrong,
but when I'm having this discussion with my patients,
I just say it's sort of like a switch has been
flipped on your immune system and sort of to
your analogy of the superhero. Now your immune
system is being revved up on purpose and it's
trying to protect you from the outside world.
It just kind of loses its ability to understand
when to stop. And it can happen with any virus,
right? I mean, it's not, there's nothing, well,
maybe there is. Something specific about COVID.
But before COVID, we saw alopecia areata in an
association with upper respiratory infections,
right? I mean, that was a thing. EBV, we know,
could do it. There's nothing unique about COVID
in the sense that we've seen this before. Right.
Is that fair? Yeah. And, you know, I think importantly
for families, this... this sort of why or wanting
to know you know these quote triggers I think
can really occupy a lot of mental energy can
consume a lot of mental energy again and this
is human nature we want an explanation for things
right but I think you know it's ultimately we're
at least from what we understand now we're not
going to have a satisfying answer there and so
I try to help families Instead of sort of fixating
on why, more so moving towards, okay, what are
we going to do about it? How are we going to
treat it, right? Because here we are. And I think,
importantly, we probably couldn't look back on
the patient's life a few months and do something
differently to make this not happen, right? Because
I think a lot of times families, they... you
know, they feel guilty or they think it was their
fault and somebody said their kid is stressed.
And it's like, no, these are just things that
happen, right? Again, it probably is a perfect
storm of things kind of lining up to tip the
scale. And, you know, here we are. But I think
important to kind of validate that desire for
an explanation, but also to, you know, really
say, at least from what we know now, we don't
have a great explanation. I'm glad you brought
up the stress part of it. Again, that's probably
not what's causing it to start, but how do you
address the role that stress or anxiety do or
don't play in this condition? Do you see that
impacting? Yeah, I mean, I can't really get into
stress as a trigger per se. Again, I think if...
we can all look back on our life a few months
and identify multiple blips on the radar right
some an illness a vaccine a move a stressor some
sort of change right and to kind of blame it
on that thing feels good because it gives us
some control but i don't think it's helpful um
and i i think that you know i always say look
there's nothing wrong with trying to address
you know stressors in life and try to minimize
them but you know i see 18 month olds with severe
alopecia areata they're not stressed right if
this were stressed like nobody would have hair
actually right um so i think it kind of does
a disservice to our patients to bring that up
because I literally have, you know, parents come
in feeling terrible, you know, that their three
-year -old is stressed because somebody, you
know, said this in a visit. And it's like, no,
no, no, this is not your fault, right? Your child
is not stressed. And again, it's just a thing
that happens. I know I'll say like some kids
just get psoriasis. Some kids just get juvenile
diabetes, right? It's all, you know, these are
all kind of, similar I think what's you know
what's tricky is that alopecia areata can wax
and wane and we see that waxing and waning versus
you know something like lupus which we know you
know disease activity can also wax and wane but
it's not necessarily visual right so that getting
better and then worse makes us feel like gosh
there must be something we're interacting with
in the environment to make this happen you know
and I always say look in five years I might say
well that was dumb what I used to say because
we learn something new. But right now we don't
have, you know, that smoking gun. So you're in
a room with your patient. You've determined in
your mind that they likely have or do have alopecia
areata. What are you putting down on your doctor's
chart note that you know is going to be essential
to capture both for assessment sake, monitoring
over time, and also what the insurance companies
are going to be looking at and saying, geez,
how is this going to affect our ability to manage
this kid behind the scenes? Yeah. So there's
sort of a dialogue around assessing disease severity
in alopecia areata that has sort of come with
having some approved therapies, right? We sort
of... predated that a little bit but you know
the only the primary tool that we that we had
is something called the SALT score: the Severity
of ALopecia Tool, which is really just a measure
of the amount of the scalp that's involved with
hair loss so um you know SALT score of 100 is
a hundred percent scalp hair loss so it's a little
counterintuitive i think sometimes so um this
gives us uh you know When somebody has complete
loss, it's easy. Patients in the middle, it's
a little trickier. You have to divide the scalp
into these quadrants, assess the amount of hair
loss in each quadrant, and then kind of add it
up. And I think SALT score is important to document
because it's what's used in all the clinical
trials as an endpoint. Basically, patients in
clinical trials, what tends to be looked at is
the percent of patients who get to a SALT score
of 20 or less, so 20% or less. scalp hair loss
or 80% or more coverage. So we have to document
SALT, but SALT has a lot of limitations, right?
You know, you have a patient who has 10% scalp
hair loss and they're also missing their eyebrows
and eyelashes. That's not... really mild, right?
Because with SALT technically, you know, classically
we say over, you know, 50% is "severe." And, and
which also by itself is a little weirder. I mean,
there's a wide range, 50 to a hundred percent
is a huge difference. Yes. So, um, you know,
we developed something, a group of us who do
a lot of hair loss, um, something called the
Alopecia Areata Scale, which was, or AASC that
was published in the JAAD a few years ago. And
basically the idea was to have sort of more of
a holistic assessment of severity. And it's still
anchored in percent hair loss, but we have these
sort of modifying factors like eyebrow eyelash
involvement, negative impact on psychosocial
functioning, positive pull test consistent with
rapid hair loss, lack of response to therapy.
So all these other things that can sort of bump
you up a level if you have... less scalp hair
loss. And for me, I really don't believe in mild
alopecia areata. It's very rare for a patient
to experience alopecia areata as mild. Somebody
with one patch and a head full of hair, okay,
maybe, but the majority of patients find it very
distressing. And so for me, the severity is largely
about... the patient's experience of it, right?
And how is it, you know, how is it affecting
the way they interact with the world and vice
versa? And, you know, importantly, these medications
we have are approved for severe alopecia areata.
Now, insurance companies often want the patient
to have a SALT score of 50 or more, 50 or more,
you know, percent scalp hair loss, because that
was what inclusion criteria in the clinical trials
was. But, you know, there's a range of severe,
right? And so for me, if I think a patient has
severe disease, and for sure, if they have severe
disease by the alopecia areata scale, I'm going
to use that to argue with the insurance company
that this is, you know, this treatment's appropriate
for this patient. Yeah, and it's great that you
use the term argue with the insurance company.
The last two patients I've had to try to get
approved for systemic medication, one was not
a physician, the other was a physician in a in
a quote unquote "peer to peer." So at least maybe
in that first example, it wasn't truly a peer.
But the experts that I was assigned to speak
with, two separate patients, two separate insurance
companies told me that the medicine we were requesting
was not approved for alopecia areata because
alopecia areata is a "cosmetic" condition. And
it drove me absolutely insane to have to sit
here and talk to someone who, if this was happening
to their kid, you know, and I know, the term
"cosmetic" would be the farthest thing from their
mind. But behind the safety of a telephone, they
were able to argue this. And I got caught - the
first one - because they asked me, "Well, what function
are you losing in this condition?" And I just
wasn't prepared for it. I mean, I geared up for
it after that and had a couple of responses.
"Well, you know, the eyebrows, the eyelashes trap
dust. They protect our eyes, the scalp. acts
as a sun protection or the hair on the scalp
acts as sun protection. It might act as a thermoregulator."
I was trying my hardest to come up with... How
do you answer that question when someone makes
that argument to you that this is just a cosmetic
condition? Yeah, I mean, you're totally right.
It's cosmetic until it's you or your family.
I think, you know, it's really hard to sort of...
just understand the experience unless you've
lived it. But there's kind of nothing like it,
actually, in terms of how absolutely devastating
and life altering it can be. And so, you know,
cosmetic, when I think of cosmetic, I think of
something that's meant to enhance appearance,
right? Cosmetic procedures are, you know, we're
trying to enhance appearance, right? And patients
with alopecia areata, they are not looking to
enhance their appearance. They are just looking
to restore normal right they are just looking
for normalcy and so um you know there is a function
to hair right some of the things that you said
it's evolutionarily conserved on our you know
above our neck basically for a reason um so there
are there is some function but but also this
is an autoimmune disease right this is there's
a clear you know scientific basis for this and
i think with that cosmetic argument is, you know,
especially for dermatology, that could be a pretty
slippery slope, right? So, we don't treat acne
that's not painful because it's not cosmetic.
We don't treat granuloma annulare? We don't treat
psoriasis that's not itchy, right? And so, you
know, if you really get into that, I think, you
know, people might say, oh, yeah, you know, I
guess you're right. But I think, importantly,
alopecia areata is different from you know, androgenetic
alopecia in a 50-year-old male, right? Pattern
hair loss. Like hair loss is not hair loss. Are
you talking to me? Yeah. You have a great head
of hair. But, you know, I think, and then just,
you know, citing literature that about what this,
you know, what this means for patients and the
impact on. on their life and increased rates
of suicidal ideation in these kids. And, you
know, for me, I often have, you know, in my notes
and then with appeals, I write about things that
the patient used to do that they don't anymore,
things that they say about it, because I think
those things can be really, really powerful,
you know, more so than me just saying, this is
a big deal. I'm just the idea that a teenager
and I'm picking on teenagers because they're
the they're the obviously affected population,
but really could be anybody. But they're trying
their hardest, to your point, just to fit in.
I mean, they just want to be normal and get through
the most awkward time of their lives. And something
like this happens to them. And to be told that
it doesn't mean anything, it's just "cosmetic"
is such an extra blow. And it drives me crazy.
I guess I can't say that I'm winning the battle,
but at least we're in the fight for it. And the
neat thing about this is why is it important
to win this argument? Because I tell my patients
I've witnessed four miracles in the 20 years
I've been doing dermatology. Propranolol for
hemangiomas, dupilumab and associated medicines
like that for atopic derm. the psoriasis medicines,
and now these medicines that we have available
to us to treat alopecia areata, where before
you just kind of would cross your fingers and
try some close-to-witchcraft stuff at times and
not get very far. So what is your approach to
treating a patient with alopecia areata? Let's
start on the lower scale. I agree with you. There
is no mild, but if you had one, or two patches,
small patches, dime, nickel, quarter size, what
are you doing for that patient? What's your first
go-to intervention? And are you combining modalities?
Treatment is really complicated because there
isn't this one -size -fits -all. But a lot of
factors, how old is the patient? How much is
it affecting them? Have they had it before? Do
they have comorbidities? All these things kind
of play in. onset of a patch or two, depending
on the age. So. for mild hair loss, which we define
as less than 20%, intralesional corticosteroids
are the mainstay of treatment for adults. And
then I say, and kids who can tolerate it. So
for me, I am not bringing up injections for kids
in elementary school. I just think the treatment
should never be worse than the disease. And while
it can often be very effective, it's uncomfortable
and it's traumatic and scary. And, you know,
so I think teenagers, I'll bring it up, but I'll
say, look, if that sounds awful to you, we don't
have to do that, right, to give them, you know,
some agency. So I always involve, you know, kids
and obviously families in the decision. You know,
topicals, if you look at data, aren't super useful.
I would say kids do. better in general with topicals
than adults. But oftentimes in these situations,
someone gets better, we pat ourselves on the
back, but really they were just going to get
better anyways. So rates of spontaneous remission
and very mild patchy disease are fairly high.
So I think often when I'm doing topicals, if
it's really just one patch, I probably would
just do a super potent topical steroid. If it's
more patches, I might add topical minoxidil,
which I didn't really used to use much of, but
actually there's some data for oral minoxidil,
even as monotherapy for alopecia ureata. So there
is this interesting role there. And it's like
these parents tend to be really motivated and
willing to do it. So if you're putting one thing
on, might as well put two things on, right? And
because it takes so long to see improvement,
I do often sort of... throw the book at it with
benign things right out of the gate because that
way if in three or four months we haven't made
any improvement we don't have to say well well
now let's add this or now let's add that right
you already got there yeah do you so so just
to be clear if you had a patient that could do
injections and that's the intralesional that
you were referring to or an ultra potent topical
steroid you feel the injections everything else
being equal, do work better than the topicals?
Yeah. And I would probably still, if they were
willing to probably have them do topical at home
in between. That's what I was going to ask you.
That's kind of what I do. I still, I still cheat
and have them do it. And again, because it just,
it takes a long time. Yeah. Do you have any use
for anthralin? That's one we used to do. You
know, now I really, I cannot remember the last
time that I used anthralin. So for people who
don't know, anthralin is, it's actually an old
school psoriasis medicine. It's sort of a tar
-based preparation that can be very irritating.
And the idea behind it, what sort of opposite
corticosteroids that, you know, we try to go
in and get rid of the inflammation. And the thought
behind anthralin is that we're going in, we're...
we're causing irritation. So sort of bringing
a different part of the immune system in to kind
of like muscle out the bad guys. And I think
anthralin is, you know, I've seen it be very
effective. It's really cumbersome. It's time
consuming. It stains your, you know, your hands
and your fixtures and your pillowcase. And I
think we just have better treatments now. Like
those are, that's something you do when you don't
have. other options, right? It's the same thing
with people who are going and having, you know,
50 % of their scalp injected with corticosteroids.
Like that's what you do when you have nothing
else, right? And also that goes to show you how
awful this disease is because we have patients,
you know, with psoriasis or atopic dermatitis
who don't want to do one injection, you know,
a month or every two months. And then here we
have patients going and having, you know, 50
needle pokes once a month in their scalp. Right.
But that, I think we're going to kind of look
back and be like, that was almost barbaric. Um,
but again, nothing else. Yeah. How about a contact
immunotherapy? Is that anything that you still
use? Yeah. Again, that is, you know, I think
I've seen, you know, a lot of kids sort of over
the years, um, who've had, you know, really terrible
reactions. And especially, I mean, I've seen
young kids treated with this and I think it's
already hard to have alopecia and then you're
uncomfortable also. It just doesn't make sense.
No, no. And that leads us to my fourth miracle,
right? These new medicines, JAK inhibitors, that
you had such a tremendous role in bringing to
the forefront of everyone's attention. How do
they work in general? And which ones are you
seeing the most success with? So JAK inhibitors
are, they're small molecules, they're pills.
And basically they are the most targeted treatment
we have right now for alopecia areata. So they
basically directly target a group of proteins
called JAKs that essentially transmit messages
in the immune system. And these are the proteins
that are responsible for sort of... keeping up
this perpetual positive feedback loop of immune
cells that keeps hair away. And so with these
medicines, you can dial that inflammation down
and oftentimes those immune cells kind of go
away and you can have regrowth of hair. So we
now have, there are three FDA approved options.
The first was baricitinib, that's approved. Presently
only 18 and up, but they have some really exciting
data in the adolescent population, so hopefully
we'll see an approval 12 and up. you know, in
the foreseeable future. And that's a once a day
pill? That's a once a day, yep. Olumiant is the
brand name. And then the next medicine that was
approved is ritlecitinib, or as you mentioned
before, Litfulo. That is approved ages 12 and
up for severe alopecia rata. And then we have
one more in adults now called lexelvi or deuruxolitinib.
And that's in trials in adolescents also. So,
you know, having an approved therapy has been...
really game -changing, right? So a lot of patients
now are getting treated. A lot of my practice
now is patients under 12 for whom, you know,
a lot of dermatologists aren't yet comfortable
using these medicines. But, you know, there are
multiple JAK inhibitors that are approved down
to age two for other indications. Olumiant or
baricitinib, for example, is approved in over
40 countries down to age two for juvenile arthritis
and eczema, actually. And something I often find
myself saying in the clinic is, if this were
arthritis, we wouldn't be having a big discussion
about this, right? And I think this alopecia areata
can be as debilitating, if not more, than arthritis,
just in a little bit of a different way, right?
And so I think, you know, with time... Hopefully
more patients will get treated. You know, baricitinib
and ritlecitinib will be studied down to six.
So hopefully we'll even see approvals in that
elementary school age group, right? And that's
really, really important, actually, because what
we're learning is that, you know, oftentimes
you read in a textbook, this is a reversible
disease. Well, in patients with very severe disease,
so complete or near complete hair loss, if it's
been three and a half to four years after that
period of time with no hair, essentially. After
that period of time, the chance of responding
to these drugs really starts to decrease. So
there is a window of opportunity. And because
a lot of patients are, you know, they lose all
their hair at age three or four or five, right?
If somebody isn't treating them or waiting until
there's an approved treatment, they may actually
lose their chance at ever having hair. So this
is... It's just really important that these medicines
get studied and hopefully eventually get approved.
But I always say off-label doesn't mean off
-limits. And so oftentimes we can get them for
kids who really need them. But for sure, it's
often a battle. Right. So what's your approach?
Let's say you have someone on a JAK inhibitor
that's approved and you have this amazing success,
maybe like the kid I referenced earlier. He gets
all of his hair back. It's looking luxurious.
What do you do once he has 100% hair regrowth?
What do you do from a management perspective
and a documentation perspective so that the insurance
company doesn't say, oh, you fixed him. We can
stop the medicine now. Right. Well, this, you
know, it's so funny because sort of every lecture
you give, people always ask what happens when
you stop. Right. And it's interesting because
I don't hear that question a lot in lectures
about atopic dermatitis or psoriasis, where we
just kind of understand that these are chronic
diseases that require chronic treatment. And
that's the same for alopecia areata. So, you
know, what's interesting is it's. not 100% the
case that everybody will lose hair if they discontinue,
but most patients will. So stopping the medicine
abruptly is never a good idea. And for me, I
think about a taper really mostly when families
are interested in that. When I was doing this
a long time ago and it was really sort of outside
the box i had more of a feeling like okay i really
need to get kids down to the minimal effective
dose and again these drugs are approved in other
chronic conditions in these age groups and so
um you know many patients do need them, at least
for the foreseeable future or until something
else comes along. But certainly never stopping
abruptly, never just cutting the dose in half.
If you do want to taper, when I give talks, I
say it's the slowest taper you've ever done in
your life for anything. Because again, any change
you make, you have to wait to see what's going
to happen with that, right? And so if a patient
comes in and says, oh, I stopped taking it and
I'm doing fine. If they just stopped it a month
ago, you know, we have no idea, right? If you
look at discontinuation data, it's really like
eight weeks or so that patients really, you start
to see it. But not everybody, some people will
maintain for longer and then lose hair. How do
you even taper it? I mean, if you're talking
about like 50 milligrams a day, what do you do?
Yeah, I typically don't, but sometimes. you know,
families really want to do it or, you know, I
think in cases where we've gotten in very early
in the disease course, you know, those patients
may have a better chance of being able to come
off and, you know, we don't have time to get
into it, but we do have a little bit of data
about what happens when people stop medicine.
And there is a small proportion of patients who
will maintain. So, you know, if I have a patient
taking, you know, a once a day medication like
Ritlecitinib, I'll have them, you know, maybe
just drop one or two pills a week for a good
four to six months. Ritlecitinib is a capsule,
so you can't, you know, you can't cut it in half.
You know, sometimes with tablets, we can cut
it in half and have a little more, you know,
sort of elegant approach to the taper, but it's
got to be very slow. Tell me if I'm Looney Tunes,
but my approach has been once I get 100% regrowth,
it's got to really be 100%. then I caution the
patients that I'm probably going to keep them
on the medicine for at least a year. And then
we'll have the discussion about tapering. And
the way I taper would be if it's a once -a -day
medicine, I would go to "every other day" and then
maybe "every other other day," maybe "Monday, Friday,"
and see if all of a sudden things are falling
out. If it's a twice-a-day medicine, and I
think there's only one of the jacks, right? It's
twice a day. then maybe I would drop it to once
a day for a month or two and just see if it changed
anything and then come off of it. But is that
a crazy way to do it? No, I mean, I definitely
don't think about it until somebody has had complete
regrowth. I tell people for, you know, at least
a year. Because again, sometimes we see waxing
and waning. It's not uncommon for patients to
get patches, you know, even when they've had
good regrowth, right? So we kind of want to make
sure this is really... real and stable before
we do it. And I think the patients who have the
best chance of successfully down titrating are
patients who have lesser severity, especially
less than 95% hair loss. So patients with 95
to 100% hair loss, it's just a different category.
They respond less well, they take longer. And
so patients with lesser severity and then lesser
what we call duration of current episodes. So
patients where you're starting earlier on in
the process. So if you have somebody who kind
of has those things in their favor, then maybe
it's someone you feel more comfortable initiating
a taper. But again, the stakes are very
high with hair. You know, somebody spent two
years growing their hair to a place where they...
are finally comfortable not wearing a wig if
they lose hair like all of a sudden they're back
in time a very long time right you kind of can't
apply the same rules to alopecia that you apply
to atopic dermatitis or psoriasis where if you
stop a drug to see what happens someone flares
well you just get back on and probably in a month
or two you're where you were before well it's
great that you mentioned atopic dermatitis there
is an overlap we talked about that or we see
this condition atopic dermatitis in patients
with alopecia areata and vice versa more than
the normal population. And there certainly have
been reports that dupilumab is being used, obviously
for atopic dermatitis. It was my second miracle.
But also it's been used for patients with alopecia
areata. I've had now two families, and I say
families very specifically, it was a brother
and sister, different ages, one family. The second
family were identical twin. sisters, who had
both very severe eczema and alopecia totalis.
And they were under 12 years old. I have no other
options from the FDA's perspective. I put them
on dupilumab. A, is that the right thing to do?
And B, what are you expecting when you're using
a medicine like that? Yeah. I mean, the dupilumab
story is really interesting because, early on,
after its approval for atopic dermatitis, there
were some reports of people actually developing
alopecia areata when treated for eczema, but
then there were also reports of patients having
regrowth. And so if you take all comers, dupilumab
is not going to be very effective for alopecia
areata. However, if you select the right patient,
so someone with severe atopic dermatitis, other
atopic comorbidities like asthma, allergies,
strong family... history of these things or some
data to suggest elevated IgE is kind of a good
marker. And in my experience, young patients
often will do very well. It's really interesting.
It's almost like there's, you know, it's a different
flavor of alopecia areata because based on the
mechanism and what we understand about alopecia
areata, it doesn't really make sense that it
works, but it's like in those patients that inflammation,
you know, from the eczema, asthma, allergies,
et cetera, is kind of what's tipping the scales.
And so, yes, for sure. I mean, dupilumab, great
safety profile, approved for eczema down to six
months of age and can be a very successful option
in the right patients. How about the flip of
that as we wind up here, where you have a patient
with severe enough eczema that they're already
on dupilumab? Their eczema is being treated with
that medicine. But yet during the course of just
their normal age progression, they're getting
older, they develop alopecia areata in the setting
of being on dupilumab. Are you thinking, geez,
I can't use a JAK inhibitor because they're already
on a systemic medicine? Or are you saying there's
no reason I shouldn't be treating this just like
I would any other kid with severe alopecia areata?
Yeah. You know, I would... So here's a case where,
you know, depending on the age, you, you know,
you might make a decision about, you know, the
drug thinking with their eczema in mind, right?
So we have JAK inhibitors that we didn't talk
about, but that are approved for atopic dermatitis
in patients 12 and up, like upadacitinib or Rinvoq
or abrocitinib, Cibinqo, and Rinvoq is approved
down to two for juvenile arthritis. And they're,
you know, A couple of months ago, we saw their
clinical trial data in alopecia areata suggesting
it's highly effective. So if the patient is over
12, a move to upadacitinib or Rinvoq would be
really appropriate and probably would treat both
the diseases. Now, have I treated patients with
both a JAK inhibitor and dupilumab at the same
time? Yes, but that is, you know. off -label,
outside the box, can be difficult to get covered.
And a lot of these patients will, you know, those
are patients honestly more for very severe eczema
than alopecia areata, but I have some with alopecia
areata also. So definitely can think about both,
but sometimes, you know, just to switch to a
jack, you can, you know, kind of kill two birds
with one stone, so to speak. Awesome. Well, as
we wrap up here, do you have any patient resources
that you recommend for people who want to get
more information? National Alopecia Areata Foundation?
National Alopecia Areata Foundation or NAF is
a great resource. They have, you know, they have
webinars, actually, you know, recordings on their
site. They have, you know, they do advocacy in
[Washington] D.C. They have a... conference every year lots
of good medical information and for dermatologists
listening if you treat alopecia rata they also
have a quote doctor finder where you can you
know put your info in there so patients you know
looking for a doctor who treats alopecia areata
near them can find you because we find a lot
of patients are you know have trouble finding
somebody who has you know knowledge of the disease
or is comfortable using some of these treatments
and so that's very helpful I think that community
of alopecia areata is also very you know active
in Facebook groups and things like this and i
think you know those for sure can be a blessing
and a curse but i think having you know meeting
people who have a shared experience um can be
really useful and i think you know for us it's
very very important to validate you know, the
experience with our patients. Like this is hard.
It is uniformly difficult. It's not some failure
of theirs that they're having a hard time. Like
it is just an awful disease. And, you know, navigating
school and all of these things are really complicated.
And so having, you know, being able to kind of
phone a friend can be helpful. Even in my clinic,
we've sort of done a little matchmaking with
kids who live near each other to have a, you
know, pen pal or FaceTime pal for sure. Academy [of Dermatology]'s
Camp Discovery is a place sometimes where these
kids can meet kids not only with alopecia but
other you know skin disorders and I think all
that you know really is valuable but importantly
this this is a treatable disease now you know
it really is it's different and so I think the
support has it's kind of evolving right because
if you get treatment soon enough you don't really
probably have to live with it, right? So finding
resources and all of that is very different from
before. It was sort of like, how do I cope? And
I think that's a really welcome change. Well
said, well said. Well, with that, I'd like to
thank Dr. Brittany Craiglow for joining us today.
What an amazing time I've had learning about
alopecia areata from someone who's obviously an
expert in her field and a champion for her patients.
Thank you so much for joining us today. Thanks
for tuning in to this episode of the Don't Be
Rash Pediatric Dermatology Podcast. I'm your
host, Dr. Andrew Krakowski. Don't forget to subscribe
to our show on your favorite podcast platform
and check out don'tberash .org for more information.
A special thank you to our nonprofit sponsor,
the St. Luke's University Health Network, for
making this episode possible. Until next time,
remember, keep calm and don't be rash.