WEBVTT

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Welcome to the Don't Be Rash Pediatric Dermatology

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Podcast, the owner's manual for your kid's skin.

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I'm your host, Dr. K, board -certified pediatric

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dermatologist and father of two boys. I'm here

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to chat with you to promote dermatological education

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and improve skin health in our children everywhere.

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Let's get started. Welcome to Don't Be Rash,

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the pediatric dermatology show, coming to you

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from beautiful downtown historic Bethlehem, Pennsylvania.

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I'm your host and board -certified pediatric

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dermatologist, Dr. Andrew Krakowski. On today's

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show, we're going to introduce you to a condition

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that, for me at least, has been one of the most

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difficult to manage, and not just because it

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can be a beast to treat clinically, but also

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because of what it can do to a patient's self

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-confidence and how these patients relate and

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interact with the social world around them. More

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specifically, we're discussing "Alopecia Areata" -

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a condition that causes hair loss in both children

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and adults. Alopecia areata is an autoimmune

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disorder in which the body's immune system mistakenly

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attacks its own hair follicles, leading to this

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very special kind of hair loss. Joining us today

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as our guest co -host is Dr. Brittany Craiglow.

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Dr. Craiglow is a nationally recognized alopecia

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areata expert and pediatric dermatologist who

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practices in Fairfield, Connecticut, and holds

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a faculty position at Yale School of Medicine.

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She's been a longtime champion for patients living

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with alopecia areata, and we're so very excited

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to have her here with us today. Welcome, Dr.

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Craiglow. What, may I ask, inspired you to get

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involved, specifically, with alopecia areata? Well,

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first of all, thanks so much for having me. It's

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really exciting to be talking about this important

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disease. You know, it's funny, I actually have

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a vivid memory of being a resident and having

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a conversation with one of my mentors, Dr. Jean

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Bologna, who asked me, "So, Britt, what are you

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going to do with your life?" And I said, "You know,

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what do you mean? What am I going to do? I'm

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going to be a pediatric dermatologist." And she

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said, "Yeah, but what are you going to do?" And

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I said, "Well, I'm not sure, but I'm definitely

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not doing hair loss."  No, this is anybody who's

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listening, maybe in training, this is your, your,

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uh, advice to never say never because you never

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know where the wind is going to blow you. And,

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you know, this all really just happened very

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organically. Um, it was, I think about, 11 years

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ago now that my husband who's also a dermatologist

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and I published a paper about treating a patient

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with alopecia areata with a medicine called tofacitinib

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which is a Janus kinase or JAK inhibitor and

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he amazingly had complete regrowth of his scalp

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hair and that just sort of kind of kicked off

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this cascade where we realized wow this is this

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is a big deal. We need to do a clinical trial.

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So we did a clinical, you know, a small clinical

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trial. We started seeing patients, you know,

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eventually I started treating adolescents and

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then some pre -adolescents and it just kind of

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took off. And, you know, I have to say, I really

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love it and am, you know, very grateful that

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this happened. I think I... love medicine largely

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because of their relationships with patients

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and families. And this is a disease that, you

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know, the relationship is really important and

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it's long -term, you know, a lot of dermatology

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is kind of transient. And this is something where,

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you know, I have patients now who I've been treating

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since, you know, the first kids I ever put on

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JAK inhibitors were in middle school at the time,

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and now they've graduated college. And that is

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really fun and really meaningful. Yeah, this

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is a topic near and dear to my heart. Just this

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past week, a teenager, I saw him when he was

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a pretty young teenager and total hair loss.

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We had him on a medicine. We'll talk about which

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one it was a little bit. And he got about three

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quarters of the way regrowth. And man, you could

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just see his entire demeanor change. Everything

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picked up. He was looking like a happy guy. And

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then I saw him back for what I thought was going

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to be a routine follow -up, still on the medicine,

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lost all of his hair. He just had a total failure

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and was back to square one. Actually, probably

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a little worse. He had some eyelash involvement

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at that point, eyebrow involvement. And we wound

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up putting him on a different JAK inhibitor,

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one that's now approved, which we'll talk about,

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Litfulo. He was doing pretty good, a little slower

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than I was hoping. And I just saw him back. for

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a six month check in. And I have to tell you,

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this guy has the most luscious locks. He's growing,

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he has grown an entire. beaver pelt on his head

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it is the thickest most luxurious hair and he

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- just like i would do if i were in his case - he

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has no plans to cut this hair anytime soon.  He

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is rocking it.  He looks like somebody stepped

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out of the 70s uh what's that matthew mcconaughey

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movie "All right, all right, all right" - Dazed and

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Confused.  He looks like he stepped right out of

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that and he was beaming ear to ear.  He's had his

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hair completely back for about three months now

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And his entire life has changed. He's going off

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to college. And he just couldn't feel any better

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about himself. So I really ran the entire gamut

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of emotions with this kid. And the best part

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about it was he knew what I wanted to do when

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I was in the room with him. And he's like, "Go

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ahead." I said, "Are you sure?"  "Yeah, go ahead."

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And he had me take my hand and just go through

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his hair. It was so awesome. I mean, it is as

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sort of cliche as it is. It really is a journey.

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And I think, you know, you can see that even

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with treatment, it's not necessarily, it's not

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over actually. And we can still see flares. And

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I think even in patients for whom treatment is

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really successful, there's often this worry,

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you know, that maybe this isn't real or. Maybe

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at some point, you know, I'm going to start to

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get patches again. I really do think it's the

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experience of losing hair, having a child lose

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hair is often traumatic, which I think if you

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didn't know the disease or didn't know anybody

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with it, you might think, well, that sounds,

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that's a little extreme, you know, but if you

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talk to anybody who's lived it, they will say

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yes for sure. And then there is kind of this

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PTSD component sometimes because, you know, things

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are going along pretty well. And then all of

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a sudden. boom, you know, you're going backwards,

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like you're a patient. And that, I think it's,

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I mean, it's devastating and it's all just, it's

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very complicated. Yeah. And, and, and not, not

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exceptional that you would expect to never have

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this happen to you, right? I mean, this can happen

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to anybody. Right. It's, it's actually pretty

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common, you know, up to 2 % lifetime incidence.

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That's, that's quite high for an autoimmune disease.

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And, you know, so often I'll say to kids, there

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may be another child even in your school who

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has this, but you might not know because they

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have really mild disease and it's covered, you

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know, by their hair. Maybe they're on treatment

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or maybe they're wearing a hair piece. And I

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think it's important for kids to hear at least

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that they're not the only person in the world

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because that's kind of what you feel like. But

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that this happens to other kids and, you know,

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sometimes. showing photos of professional athletes

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or celebrities who have experienced alopecia

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areata can be helpful, I think, to patients and

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families just to understand that they really

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aren't alone. Well, for the audience listening

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out there, talk a little bit about what alopecia

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areata looks like. Yeah, it's a really heterogeneous

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disease. So alopecia areata can... can be anything

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from a very small, you know, dime -sized patch

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of hair loss. Classically, it's what we call

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smooth alopecia, so completely devoid of hair.

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But in reality, that's not always the case. And

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that can turn into many patches in some patients.

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And in a, you know, not an insignificant proportion,

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that can actually become complete scalp hair

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loss or complete scalp eyebrow eyelash body hair

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loss and historically we've used the terms "Alopecia

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Totalis" to describe complete scalp hair loss

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or "Alopecia Universalis" to to describe complete

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loss of all body hair.  But those of us who do

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a lot of this are kind of trying to move away

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from that just because even among dermatologists,

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we don't exactly agree on those terms. And so

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it's really, it's all "Alopecia Areata." It's just

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a spectrum of disease. And I think importantly,

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patients who are kind of on the milder end or

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in the middle are often, again, very worried

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that tomorrow's going to be the day they wake

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up and they're the person on the severe end.

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And so it's... You know, Jerry Shapiro, one of

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sort of the greats of hair loss, often says the

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only predictable thing about it is that it's

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unpredictable. And I think that, you know, for

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us is. treating physicians is really tricky because

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everybody, you know, this is kind of the epitome

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of feeling out of control as a parent or as a

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patient. And it would be really nice to have

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a roadmap and we just don't. Right. And you mentioned

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scalp, eyebrows, eyelashes, rest of the body

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for young men can affect the beard as well. Got

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a couple of patients that we're treating really

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without. any scalp involvement. It's just the

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beard. And you would think, geez, maybe you just

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shaved the beard and never noticed this. But

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for whatever reason, that's important enough

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that we're going through that journey together

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and trying to come up with some solutions to

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that. Are there predictors clinically when you

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walk into the room? A, can you tell, geez, I

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think this person has alopecia areata. What are

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you doing on your exam that's specific looking

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for? clues that this is alopecia areata and then

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what clues might you have available to you as

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a clinician that give you some idea of where

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this is going is this going to be a is this going

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to be a severe course or is this something i

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might be able to to eke out pretty pretty easily

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over a couple of months with some topical medicines

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rather than say for example a systemic one right

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well i would say For the most part, alopecia

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areata is a pretty straightforward clinical diagnosis

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because oftentimes people present with these

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classically round patches of smooth alopecia.

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There are some cases, I think especially... early

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on in disease where it may be diagnosed or in

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patients who have more of what we call diffuse

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alopecia areata where they have more of a generalized

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thinning rather than actually discrete patches.

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And that I actually think is probably more common

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than we think. I see it not infrequently, especially

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in young children. And I think sometimes it's

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so subtle that it just gets missed. And in those

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kids, tricoscopy can be very helpful when there

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are certain things and basically for those not.

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medical people listening that's just basically

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taking a magnifier and looking at the scalp and

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looking at the follicles up close and there are

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certain features of alopecia areata that you

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know that we can see sometimes and so you know

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every once in a while we might need to do a scalp

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biopsy but i would say that's really really uncommon

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especially in kids i think in adults sometimes

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we have more mimickers you know worrying about

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scarring hair loss etc um and in kids you know,

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usually we don't need to do that. And in terms

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of clinical features, you know, there are some

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things that have been associated with, often

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it's... called sort of worst prognosis, or we

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say that, but that doesn't really mean lack of

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response to treatment, just more chronic course.

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So things that kind of ring the alarm bells or

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raise the antennae are very early age of onset,

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so like under five or six. More severe disease

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at the onset, so kids do come in and, you know,

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they're having rapid shedding and missing 50%

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of their scalp hair over the course of a couple

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months. Kids who also have eczema. So we see

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eczema or atopic dermatitis in about 30% of

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kids who also have alopecia areata. That can

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be associated with a more chronic course. Patients

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who have nail involvement. So fingernails can

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also be affected as a keratinized structure.

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And sometimes we see it's very, very subtle,

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but little pitting, little dots in the nails.

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And then in some patients, it's very severe,

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what we call trachonychia, which is a very

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sort of rough sandpaper type look. to the fingernails

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and it can affect all of them. And that, you

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know, cosmetically can be really upsetting, but

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also functionally it can be problematic, right?

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And so I think most of these things are kind

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of intuitive in that, you know, if the worst,

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the scalp hair or the worst, you know, the involvement,

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the more likely it is to be chronic, the younger

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the age of onset. So those are, you know, if

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I see a patient with those things, I am. potentially

00:13:45.439 --> 00:13:47.580
thinking about being a little bit more aggressive

00:13:47.580 --> 00:13:50.259
at the outset, maybe seeing them back sooner.

00:13:50.700 --> 00:13:52.379
But it's tough, right? Because somebody could

00:13:52.379 --> 00:13:55.340
have all of the above, have one patch in their

00:13:55.340 --> 00:13:57.580
whole life, and then that's it. And then somebody

00:13:57.580 --> 00:13:59.500
could have none of those things and have very

00:13:59.500 --> 00:14:01.580
severe hair loss. Another thing I didn't mention

00:14:01.580 --> 00:14:04.220
is a first degree relative with alopecia areata.

00:14:04.240 --> 00:14:07.480
So that also associated with greater likelihood

00:14:07.480 --> 00:14:11.120
of severity and chronicity. Do you as a clinician

00:14:11.120 --> 00:14:15.940
use... the classic "ophiasis" pattern as a prognostic

00:14:15.940 --> 00:14:18.179
indicator anymore, or is that sort of out the

00:14:18.179 --> 00:14:21.019
window? Yeah, well, no, for sure. "Ophiasis" refers

00:14:21.019 --> 00:14:25.100
to a pattern that is actually pretty common.

00:14:25.200 --> 00:14:28.700
It's a sort of a band -like distribution on the

00:14:28.700 --> 00:14:30.879
nape of the neck and then up and over the ears.

00:14:30.960 --> 00:14:34.799
And this is... traditionally sort of more difficult

00:14:34.799 --> 00:14:37.480
to treat and so yes you know it's interesting

00:14:37.480 --> 00:14:39.980
we even have patients who have you know complete

00:14:39.980 --> 00:14:43.000
scalp hair loss and we treat them and they grow

00:14:43.000 --> 00:14:45.659
everything back except for that ophiasis pattern

00:14:45.659 --> 00:14:48.320
it's really interesting because we have no idea

00:14:48.320 --> 00:14:52.720
why that area is commonly effective and you know

00:14:52.720 --> 00:14:55.059
more stubborn or recalcitrant to treatment but

00:14:55.059 --> 00:14:57.460
but for sure that's something that if we see

00:14:57.460 --> 00:15:00.220
it we're thinking okay we may need to do a little

00:15:00.220 --> 00:15:02.490
bit more than we need to do for the the patient

00:15:02.490 --> 00:15:05.950
who has one little patch. I just, my own personal

00:15:05.950 --> 00:15:08.250
experience is I just tend to see kids with that

00:15:08.250 --> 00:15:10.210
pattern. Yeah, it's very common, I think. It's

00:15:10.210 --> 00:15:12.889
not uncommon. So to me, it's not that helpful.

00:15:13.029 --> 00:15:15.750
It's more what I see than not, if that makes

00:15:15.750 --> 00:15:18.830
sense. What's the opposite, the "Sisaipho?" Yes,

00:15:18.870 --> 00:15:21.830
which actually, you know, if you look at the

00:15:21.830 --> 00:15:24.230
literature, not super common, but we do, you

00:15:24.230 --> 00:15:28.009
know, we do see it. And, you know, I think these,

00:15:28.110 --> 00:15:31.200
it's sort of nice. in a way to have these names

00:15:31.200 --> 00:15:33.480
if you're, you know, a splitter, but it's all,

00:15:33.500 --> 00:15:36.080
it's all the same thing really. And I think most

00:15:36.080 --> 00:15:39.500
patients, no matter how, how much or how little

00:15:39.500 --> 00:15:42.279
hair loss they have, they want all of their hair

00:15:42.279 --> 00:15:47.600
back. Right. Honestly, the way I use the ophiasis

00:15:47.600 --> 00:15:50.799
pattern is mostly to as an additional documentation

00:15:50.799 --> 00:15:54.320
for when I go to knowing that I'm going to have

00:15:54.320 --> 00:15:57.220
to argue with an insurance company down the line

00:15:57.220 --> 00:15:59.139
about treatment. And I can say, well, here's

00:15:59.139 --> 00:16:02.139
100 articles that suggest this is going to be

00:16:02.139 --> 00:16:04.759
a tougher treatment. Otherwise, I don't really

00:16:04.759 --> 00:16:08.139
put any stock in it whatsoever. When you walk

00:16:08.139 --> 00:16:11.940
in the room, do you do any sort of hair pull

00:16:11.940 --> 00:16:14.980
tests on these patients? And if so, how are you

00:16:14.980 --> 00:16:16.460
using that? What are you expecting to find in

00:16:16.460 --> 00:16:19.679
alopecia areata? Yeah, typically I do, you know,

00:16:19.720 --> 00:16:23.700
I'll tug on if a patient just has patchy disease,

00:16:23.860 --> 00:16:26.960
kind of tug on hair at the periphery to see if

00:16:26.960 --> 00:16:30.019
that's, you know, if it's active. Patients with

00:16:30.019 --> 00:16:32.940
shedding, I think the hair pull is really important

00:16:32.940 --> 00:16:35.399
to kind of get an idea of is this, you know,

00:16:35.419 --> 00:16:38.759
what's, how much time do we have here? How urgent

00:16:38.759 --> 00:16:41.059
is this? And, you know, we see kids sometimes

00:16:41.059 --> 00:16:44.139
where, you know, they are shedding at such a

00:16:44.139 --> 00:16:46.279
massive rate that you just run your fingers through

00:16:46.279 --> 00:16:48.860
there. hair and, you know, you get a handful.

00:16:48.940 --> 00:16:52.059
And in that patient, like time is of the absolute

00:16:52.059 --> 00:16:55.399
essence because, you know, even no matter what

00:16:55.399 --> 00:16:57.279
you do, it's going to get worse before it gets

00:16:57.279 --> 00:16:59.539
better. And I think that's, you know, something

00:16:59.539 --> 00:17:02.299
that's very difficult about treating alopecia

00:17:02.299 --> 00:17:05.779
is that there's this lag always with treatment

00:17:05.779 --> 00:17:08.400
and that, you know, anything we're seeing happening

00:17:08.400 --> 00:17:11.859
today was really probably set in motion several

00:17:11.859 --> 00:17:17.559
weeks, if not more. ago right and so that means

00:17:17.559 --> 00:17:20.519
that any treatment any intervention we make we're

00:17:20.519 --> 00:17:22.740
going to have to wait you know in many cases

00:17:22.740 --> 00:17:26.400
months actually to see if it's going to be effective

00:17:26.400 --> 00:17:28.740
and I think that can be really hard but is an

00:17:28.740 --> 00:17:30.880
important thing to talk to patients and families

00:17:30.880 --> 00:17:34.220
about just so that they have expectations about

00:17:34.829 --> 00:17:37.589
you know, that are appropriate. So I often will,

00:17:37.730 --> 00:17:39.569
I think it's important to explain the disease,

00:17:39.730 --> 00:17:42.349
right? And explain what's happening. I need to

00:17:42.349 --> 00:17:46.349
reassure kids that they're okay and they're healthy.

00:17:46.430 --> 00:17:48.690
And often I, especially the little kids, I'll

00:17:48.690 --> 00:17:50.829
tell them that. Their immune system is kind of

00:17:50.829 --> 00:17:53.890
trying to be a superhero. It's going after something

00:17:53.890 --> 00:17:57.809
it really doesn't need to do. But, you know,

00:17:57.829 --> 00:17:59.769
the point of treatment is we're not really growing

00:17:59.769 --> 00:18:02.769
hair per se. We're trying to get rid of that

00:18:02.769 --> 00:18:06.769
immune system activation. making it so the hair

00:18:06.769 --> 00:18:08.750
can't grow. So first we have to get rid of the

00:18:08.750 --> 00:18:11.009
immune cells. Then the hair cycle has to reset.

00:18:11.349 --> 00:18:13.470
Then the hair has to start to grow, which we

00:18:13.470 --> 00:18:15.309
know it doesn't grow right from the tippy top

00:18:15.309 --> 00:18:17.710
of our scalp, right? And so all of that just

00:18:17.710 --> 00:18:19.630
really takes time. And I think, you know, as

00:18:19.630 --> 00:18:21.829
long as you explain that, you're probably not

00:18:21.829 --> 00:18:24.390
going to get a call a week into treatment. You

00:18:24.390 --> 00:18:27.509
know, we're not seeing anything yet. No, that's

00:18:27.509 --> 00:18:30.450
a great point. A lot of this is anticipatory

00:18:30.450 --> 00:18:32.730
guidance and you can't predict the future. I

00:18:32.730 --> 00:18:36.289
totally agree. You mentioned One of the tools

00:18:36.289 --> 00:18:39.750
that I've been better at using in the last five

00:18:39.750 --> 00:18:42.809
to seven years of my career has been a dermatoscope.

00:18:43.329 --> 00:18:46.009
And is that a tool that you are finding yourself

00:18:46.009 --> 00:18:48.450
using for these patients? And if so, what are

00:18:48.450 --> 00:18:50.690
you looking for? How are you using it? Yes, for

00:18:50.690 --> 00:18:53.549
sure. So, you know, I think I often say that.

00:18:53.849 --> 00:18:56.349
you know, dermoscopy of pigmented lesions, I'm

00:18:56.349 --> 00:18:59.109
not the best at. There are so many different

00:18:59.109 --> 00:19:01.750
patterns and things to learn about. But with

00:19:01.750 --> 00:19:04.369
hair, there's sort of a finite number of things

00:19:04.369 --> 00:19:07.210
that you're looking for, right? So I think it's

00:19:07.210 --> 00:19:11.230
really helpful when you know the diagnosis to

00:19:11.230 --> 00:19:14.670
pull out the dermatoscope and look, right? Because

00:19:14.670 --> 00:19:16.670
then you can start to see some of these things

00:19:16.670 --> 00:19:18.990
that we... you know, that we read about like

00:19:18.990 --> 00:19:21.289
open hair follicles, which sometimes will look

00:19:21.289 --> 00:19:24.450
like yellow globules in patients with fair skin

00:19:24.450 --> 00:19:27.309
types, exclamation mark hairs, which are these

00:19:27.309 --> 00:19:29.809
tapered hairs. Sometimes we see broken hairs.

00:19:29.990 --> 00:19:32.349
These are all things that can kind of be helpful

00:19:32.349 --> 00:19:34.930
in making the diagnosis. So yes, for sure. I

00:19:34.930 --> 00:19:39.089
basically always do it. And again, I think I've

00:19:39.089 --> 00:19:41.670
gotten more comfortable over time as I've seen

00:19:41.670 --> 00:19:45.470
normal over and over again and abnormal over

00:19:45.470 --> 00:19:47.880
and over again. So that when you have that patient

00:19:47.880 --> 00:19:51.220
who has maybe really mild diffuse alopecia areata,

00:19:51.259 --> 00:19:53.500
you can look around and, oh, well, there's an

00:19:53.500 --> 00:19:55.160
exclamation mark hair. You know what? I think

00:19:55.160 --> 00:19:58.460
we're dealing with this. And we may save them

00:19:58.460 --> 00:20:00.440
a biopsy, which we know in pediatric patients

00:20:00.440 --> 00:20:03.779
especially can be really hard. Can you explain,

00:20:03.900 --> 00:20:05.619
since you brought it up, the exclamation mark

00:20:05.619 --> 00:20:08.559
hair phenomenon? What are you looking at? This

00:20:08.559 --> 00:20:13.319
is a sign of active disease. These are hairs

00:20:13.319 --> 00:20:16.799
that the immune system is really... getting revved

00:20:16.799 --> 00:20:21.039
up about and trying to kind of get rid of, if

00:20:21.039 --> 00:20:23.779
you will. So they look like little exclamation

00:20:23.779 --> 00:20:27.480
points with tapered hair on the scalp side and

00:20:27.480 --> 00:20:31.359
then distally a little bit wider. So they're

00:20:31.359 --> 00:20:34.460
just, they're a pretty good sign of active disease.

00:20:34.839 --> 00:20:38.319
How about black dots? Yeah, so we see black dots.

00:20:38.339 --> 00:20:41.140
I mean, black dots are tricky because they can

00:20:41.140 --> 00:20:44.779
be seen in Lots of, you know, different hair

00:20:44.779 --> 00:20:47.720
disorders, you know, like tinea capitis. And

00:20:47.720 --> 00:20:50.460
sometimes we'll see them in hair pulling. And,

00:20:50.519 --> 00:20:54.359
you know, those are for sure always, I wouldn't

00:20:54.359 --> 00:20:56.119
say always, but, you know, they're going to be

00:20:56.119 --> 00:20:59.660
on your differential diagnosis. So, again, I

00:20:59.660 --> 00:21:02.599
think the ones that are kind of more classic

00:21:02.599 --> 00:21:06.819
to alopecia areata tend to be more helpful. But,

00:21:06.859 --> 00:21:09.119
again. Usually you're going to be able to make

00:21:09.119 --> 00:21:12.880
the diagnosis from three feet away, right? But

00:21:12.880 --> 00:21:14.799
it's still useful, I think, even when you know

00:21:14.799 --> 00:21:17.640
what it is, to have a look so that if you're

00:21:17.640 --> 00:21:19.519
not really sure, maybe that can be helpful in

00:21:19.519 --> 00:21:22.140
the future. How does scale, the presence of scale,

00:21:22.279 --> 00:21:24.980
change your differential diagnosis, your list

00:21:24.980 --> 00:21:27.029
of what this could be? Yeah. So, you know, we

00:21:27.029 --> 00:21:28.990
always tell the residents if it's scaly, scrape

00:21:28.990 --> 00:21:34.009
it. And tinea capitis for sure, you know, is

00:21:34.009 --> 00:21:37.190
usually scaly. But I will tell you alopecia areata,

00:21:37.289 --> 00:21:40.450
sometimes, especially very acutely, you can see

00:21:40.450 --> 00:21:44.789
scale and you can sometimes see erythema or redness.

00:21:44.789 --> 00:21:48.410
And so this does not necessarily mean it's not

00:21:48.410 --> 00:21:51.269
alopecia areata. You know, there are certain

00:21:51.269 --> 00:21:54.279
types of scarring hair loss, which are. very

00:21:54.279 --> 00:21:58.200
uncommon in children, lichen planopilaris where

00:21:58.200 --> 00:22:00.099
there'd be scale, but it's right around the hair

00:22:00.099 --> 00:22:04.339
follicle. We also have scale in seborrheic dermatitis,

00:22:04.480 --> 00:22:07.160
which lots of kids just in general have. So you

00:22:07.160 --> 00:22:08.680
could have two things at once. Every teenage

00:22:08.680 --> 00:22:13.839
boy. You know, absence of scale, I think, is

00:22:13.839 --> 00:22:18.140
usually a good, you know, in the for alopecia

00:22:18.140 --> 00:22:20.900
areata category, but presence doesn't mean it's

00:22:20.900 --> 00:22:23.609
not alopecia areata. But for sure, we want to

00:22:23.609 --> 00:22:25.230
rule, you know, I see kids sometimes who, you

00:22:25.230 --> 00:22:27.049
know, they've been called tinea capitis initially.

00:22:28.549 --> 00:22:30.710
I think that's, you know, we see that a lot from

00:22:30.710 --> 00:22:34.130
pediatricians or, you know, sort of first presentation

00:22:34.130 --> 00:22:36.349
because it's, you know, common things are common,

00:22:36.470 --> 00:22:38.369
right? And that's going to be the most common

00:22:38.369 --> 00:22:40.930
diagnosis. And especially if you're, you know,

00:22:40.970 --> 00:22:43.349
you're not seeing this a lot, it's, you know,

00:22:43.349 --> 00:22:46.690
probably easy to think that it's that initially.

00:22:47.150 --> 00:22:50.289
For tinea capitis or ringworm in the scalp, I

00:22:50.289 --> 00:22:53.680
want to feel a lymph node. And I want a culture

00:22:53.680 --> 00:22:57.779
or at least I want to scrape the fungus off the

00:22:57.779 --> 00:23:00.279
scalp and find it in my microscope down the hall.

00:23:00.440 --> 00:23:03.559
But even sometimes if I don't see it under the

00:23:03.559 --> 00:23:06.259
microscope, I don't trust myself enough to say

00:23:06.259 --> 00:23:09.319
100% I'm right. I'll still do that fungal culture

00:23:09.319 --> 00:23:12.900
two to four weeks back, get a negative or find

00:23:12.900 --> 00:23:15.380
that I... actually did detect some fungus and

00:23:15.380 --> 00:23:18.599
change the diagnosis but uh i'm not i'm not happy

00:23:18.599 --> 00:23:21.240
calling something tinea capitis without without

00:23:21.240 --> 00:23:24.319
at least a thorough comprehensive workup on those

00:23:24.319 --> 00:23:27.779
kids yeah we i like to say we're doctors so we

00:23:27.779 --> 00:23:32.640
ought to like data i like it i like it now you

00:23:32.640 --> 00:23:36.000
mentioned that alopecia areata a little bit harder

00:23:36.000 --> 00:23:38.740
course when it's associated with atopic dermatitis

00:23:38.740 --> 00:23:40.819
or eczema what are some of the other conditions

00:23:40.819 --> 00:23:43.869
that you see running with alopecia areata that

00:23:43.869 --> 00:23:46.769
might have an impact on either finding it or

00:23:46.769 --> 00:23:49.430
having it be more prevalent popping up? Yeah,

00:23:49.490 --> 00:23:51.990
so for sure. Far and away, eczema is the most

00:23:51.990 --> 00:23:56.509
common comorbidity. In general, most patients

00:23:56.509 --> 00:24:00.190
with alopecia areata are healthy. It is the only

00:24:00.190 --> 00:24:04.329
thing that they have. And I think this is important

00:24:04.329 --> 00:24:07.910
because I think especially families feel like...

00:24:08.799 --> 00:24:11.539
there's gotta be something wrong. This must be

00:24:11.539 --> 00:24:15.220
because of X, Y, Z, which you completely understand

00:24:15.220 --> 00:24:17.680
because it is kind of wild that, wow, this can

00:24:17.680 --> 00:24:20.380
just happen out of nowhere. And it's like, yeah,

00:24:20.420 --> 00:24:23.259
this is what autoimmune diseases do. So most

00:24:23.259 --> 00:24:26.759
kids are completely healthy otherwise. Often

00:24:26.759 --> 00:24:30.460
there is a family history, sort of a sprinkling

00:24:30.460 --> 00:24:33.559
of autoimmunity in the family. Somebody has celiac

00:24:33.559 --> 00:24:36.900
disease, grandma has rheumatoid arthritis, maybe

00:24:36.900 --> 00:24:40.309
someone has Hashimoto's. or other type of thyroid

00:24:40.309 --> 00:24:43.009
disease. But again, not always. There can be

00:24:43.009 --> 00:24:46.869
a kid with none of these things, right? So I

00:24:46.869 --> 00:24:51.250
think we've seen some papers in the last several

00:24:51.250 --> 00:24:54.650
years about what blood work should be checked

00:24:54.650 --> 00:24:58.490
in patients. And really, in a healthy kid who

00:24:58.490 --> 00:25:02.289
has... no concerning signs on review of systems

00:25:02.289 --> 00:25:05.430
and no first degree relative with thyroid disease,

00:25:05.630 --> 00:25:08.730
you actually don't need to check any labs. And

00:25:08.730 --> 00:25:11.450
so I think sometimes, you know, it's done because

00:25:11.450 --> 00:25:15.170
it is sort of, it makes everybody feel a little

00:25:15.170 --> 00:25:18.470
bit better, right? To be sure nothing is wrong.

00:25:19.430 --> 00:25:21.910
Sometimes maybe you'll catch a low vitamin D

00:25:21.910 --> 00:25:25.509
or something, but importantly, that's not. why

00:25:25.509 --> 00:25:28.329
the patient has alopecia areata, right? Sometimes

00:25:28.329 --> 00:25:30.630
I think the laboratory investigation is this

00:25:30.630 --> 00:25:33.930
family see as, you know, trying to figure out

00:25:33.930 --> 00:25:37.029
the cause, and it's not. It's more to screen

00:25:37.029 --> 00:25:40.990
for things that can go along with alopecia areata.

00:25:41.049 --> 00:25:45.069
So, you know, in general... a lab workup isn't

00:25:45.069 --> 00:25:48.309
needed unless there's something concerning. You

00:25:48.309 --> 00:25:50.349
know, caveat would be patient with first degree

00:25:50.349 --> 00:25:53.609
relative with thyroid disease, patients with

00:25:53.609 --> 00:25:56.970
trisomy 21 should also have a TSH check. Typically

00:25:56.970 --> 00:26:00.130
they are seeing an endocrinologist anyways. And

00:26:00.130 --> 00:26:01.809
then for sure, if something is concerning, you

00:26:01.809 --> 00:26:03.809
know, that the child is not growing, they're

00:26:03.809 --> 00:26:06.769
having a lot of abdominal pain, you know, there

00:26:06.769 --> 00:26:08.269
are certain things that, you know, are going

00:26:08.269 --> 00:26:10.789
to make us check some labs, but otherwise it's

00:26:10.789 --> 00:26:13.279
not necessary. And I would say. Please do not

00:26:13.279 --> 00:26:16.660
check an ANA because a lot of these patients,

00:26:16.759 --> 00:26:19.900
so an ANA is anti-nuclear antibody. It's sort

00:26:19.900 --> 00:26:23.720
of a kind of a marker of tendency toward autoimmunity,

00:26:23.720 --> 00:26:26.400
but lots of people have a positive ANA and have

00:26:26.400 --> 00:26:29.450
no. you know, nothing going on with them. And

00:26:29.450 --> 00:26:31.910
the problem with checking it is in this population,

00:26:31.910 --> 00:26:34.690
it's more likely to be positive. And then all

00:26:34.690 --> 00:26:37.150
of a sudden the patient is getting referred to

00:26:37.150 --> 00:26:40.210
rheumatology and, you know, having all these

00:26:40.210 --> 00:26:44.730
labs done when they really don't need to. So

00:26:44.730 --> 00:26:48.190
again, I think it can be hard, but really we

00:26:48.190 --> 00:26:50.829
don't need to be doing some wild workup for these

00:26:50.829 --> 00:26:57.839
kids. And that extra layer of workup delays accurate

00:26:57.839 --> 00:27:00.220
diagnosis and probably most importantly, potentially

00:27:00.220 --> 00:27:03.640
delays early management, getting there fast with

00:27:03.640 --> 00:27:05.920
some of the medicines that we'll talk about shortly.

00:27:06.160 --> 00:27:09.480
And yeah, you're just going down a rabbit hole

00:27:09.480 --> 00:27:12.980
you don't need to. One thing I've noticed over

00:27:12.980 --> 00:27:14.640
the last couple of years, specifically, I think

00:27:14.640 --> 00:27:16.880
you'll know what years I'm talking about, has

00:27:16.880 --> 00:27:20.440
been after COVID. I've seen a tremendous, I don't

00:27:20.440 --> 00:27:22.299
know if it's just a selection bias or maybe I'm

00:27:22.299 --> 00:27:24.400
paying more attention to it, but either because

00:27:24.400 --> 00:27:29.809
of covid infection itself or after actually quite

00:27:29.809 --> 00:27:32.490
a number of cases after what parents have said

00:27:32.490 --> 00:27:35.730
this is this happened a month or two after the

00:27:35.730 --> 00:27:38.750
vaccine and you know obviously i'm a huge proponent

00:27:38.750 --> 00:27:42.390
as a pediatrician of vaccines but i'm also a

00:27:42.990 --> 00:27:46.009
- and I would say even behind the scenes, the Department

00:27:46.009 --> 00:27:47.910
of Justice, which I didn't know about until they

00:27:47.910 --> 00:27:50.250
asked us to do this, they have a vaccine program

00:27:50.250 --> 00:27:55.170
where you can champion the vaccine and say, is

00:27:55.170 --> 00:27:57.329
this case of alopecia areata that they're presenting

00:27:57.329 --> 00:28:00.869
to you, is this likely or unlikely to be associated

00:28:00.869 --> 00:28:03.490
with the vaccine? And for whatever reason, I've

00:28:03.490 --> 00:28:08.210
just seen quite a spike in those cases of alopecia

00:28:08.210 --> 00:28:12.119
areata thought to be. timely, temporally associated

00:28:12.119 --> 00:28:16.200
with either COVID infection or the vaccine when

00:28:16.200 --> 00:28:17.960
we were giving it to everybody? I don't know,

00:28:17.960 --> 00:28:20.000
is that an experience? Yeah, I mean, so this

00:28:20.000 --> 00:28:22.660
is, you know, really complicated. And I think

00:28:22.660 --> 00:28:28.799
that the data is mixed. You know, if you think

00:28:28.799 --> 00:28:33.279
back to, you know, late 2020, 2021, 22. everybody

00:28:33.279 --> 00:28:36.900
was getting COVID or vaccinated or boosted like

00:28:36.900 --> 00:28:39.680
all the time, right? And so the chance that a

00:28:39.680 --> 00:28:42.720
patient can look back a couple of months and

00:28:42.720 --> 00:28:45.420
have one of those things have happened is going

00:28:45.420 --> 00:28:47.839
to be pretty high, right? So there's going to

00:28:47.839 --> 00:28:51.500
be a lot of correlation there. You know, I think

00:28:51.500 --> 00:28:54.180
that... What we do know, though, is that COVID

00:28:54.180 --> 00:28:58.720
is a very immunogenic virus, as is the vaccine.

00:28:58.839 --> 00:29:02.039
It really revs up our immune systems. And interestingly,

00:29:02.240 --> 00:29:04.839
some of the pathways that get revved up are sort

00:29:04.839 --> 00:29:08.099
of similar to alopecia areata. So, you know,

00:29:08.119 --> 00:29:10.859
I think my feeling about kind of the triggers,

00:29:10.900 --> 00:29:15.019
which people get very fixated on, understandably,

00:29:15.059 --> 00:29:18.900
is I think that... So probably it's never one

00:29:18.900 --> 00:29:22.079
thing. It's probably multifactorial. We know

00:29:22.079 --> 00:29:24.160
you have to have this genetic predisposition,

00:29:24.180 --> 00:29:26.339
but in some cases may this be the thing that

00:29:26.339 --> 00:29:29.480
kind of tipped the scales. Sure. So, you know,

00:29:29.480 --> 00:29:31.220
interestingly, one of the treatments we have

00:29:31.220 --> 00:29:34.579
for alopecia areata called baricitinib, or the

00:29:34.579 --> 00:29:36.180
brand name is Olumiant, is actually approved

00:29:36.180 --> 00:29:39.220
for the treatment of COVID in severe hospitalized

00:29:39.220 --> 00:29:41.599
patients in combination with an antiviral medicine.

00:29:41.839 --> 00:29:44.980
So again, kind of showing that these immune pathways

00:29:44.980 --> 00:29:48.480
are really, they overlap and shared. And so it's

00:29:48.480 --> 00:29:51.779
not a huge stretch to think that the virus and

00:29:51.779 --> 00:29:54.839
or the vaccine may, you know, play a role in

00:29:54.839 --> 00:29:58.430
the onset in some patients. Tell me if I'm wrong,

00:29:58.509 --> 00:30:00.789
but when I'm having this discussion with my patients,

00:30:00.910 --> 00:30:03.809
I just say it's sort of like a switch has been

00:30:03.809 --> 00:30:06.490
flipped on your immune system and sort of to

00:30:06.490 --> 00:30:09.890
your analogy of the superhero. Now your immune

00:30:09.890 --> 00:30:13.430
system is being revved up on purpose and it's

00:30:13.430 --> 00:30:15.529
trying to protect you from the outside world.

00:30:15.650 --> 00:30:18.369
It just kind of loses its ability to understand

00:30:18.369 --> 00:30:21.950
when to stop. And it can happen with any virus,

00:30:22.029 --> 00:30:23.710
right? I mean, it's not, there's nothing, well,

00:30:23.789 --> 00:30:26.869
maybe there is. Something specific about COVID.

00:30:26.970 --> 00:30:31.789
But before COVID, we saw alopecia areata in an

00:30:31.789 --> 00:30:34.230
association with upper respiratory infections,

00:30:34.329 --> 00:30:36.930
right? I mean, that was a thing. EBV, we know,

00:30:36.950 --> 00:30:40.609
could do it. There's nothing unique about COVID

00:30:40.609 --> 00:30:43.890
in the sense that we've seen this before. Right.

00:30:43.930 --> 00:30:46.990
Is that fair? Yeah. And, you know, I think importantly

00:30:46.990 --> 00:30:53.359
for families, this... this sort of why or wanting

00:30:53.359 --> 00:30:56.539
to know you know these quote triggers I think

00:30:56.539 --> 00:31:01.640
can really occupy a lot of mental energy can

00:31:01.640 --> 00:31:04.420
consume a lot of mental energy again and this

00:31:04.420 --> 00:31:06.700
is human nature we want an explanation for things

00:31:06.700 --> 00:31:10.839
right but I think you know it's ultimately we're

00:31:10.839 --> 00:31:13.299
at least from what we understand now we're not

00:31:13.299 --> 00:31:15.819
going to have a satisfying answer there and so

00:31:15.819 --> 00:31:19.759
I try to help families Instead of sort of fixating

00:31:19.759 --> 00:31:24.180
on why, more so moving towards, okay, what are

00:31:24.180 --> 00:31:26.339
we going to do about it? How are we going to

00:31:26.339 --> 00:31:28.940
treat it, right? Because here we are. And I think,

00:31:28.940 --> 00:31:33.319
importantly, we probably couldn't look back on

00:31:33.319 --> 00:31:37.539
the patient's life a few months and do something

00:31:37.539 --> 00:31:42.259
differently to make this not happen, right? Because

00:31:42.259 --> 00:31:45.359
I think a lot of times families, they... you

00:31:45.359 --> 00:31:47.140
know, they feel guilty or they think it was their

00:31:47.140 --> 00:31:49.740
fault and somebody said their kid is stressed.

00:31:49.859 --> 00:31:52.599
And it's like, no, these are just things that

00:31:52.599 --> 00:31:55.099
happen, right? Again, it probably is a perfect

00:31:55.099 --> 00:31:57.619
storm of things kind of lining up to tip the

00:31:57.619 --> 00:31:59.920
scale. And, you know, here we are. But I think

00:31:59.920 --> 00:32:04.099
important to kind of validate that desire for

00:32:04.099 --> 00:32:08.220
an explanation, but also to, you know, really

00:32:08.220 --> 00:32:10.640
say, at least from what we know now, we don't

00:32:10.640 --> 00:32:13.400
have a great explanation. I'm glad you brought

00:32:13.400 --> 00:32:17.640
up the stress part of it. Again, that's probably

00:32:17.640 --> 00:32:20.579
not what's causing it to start, but how do you

00:32:20.579 --> 00:32:24.720
address the role that stress or anxiety do or

00:32:24.720 --> 00:32:26.980
don't play in this condition? Do you see that

00:32:26.980 --> 00:32:30.460
impacting? Yeah, I mean, I can't really get into

00:32:30.460 --> 00:32:38.420
stress as a trigger per se. Again, I think if...

00:32:38.730 --> 00:32:41.730
we can all look back on our life a few months

00:32:41.730 --> 00:32:44.650
and identify multiple blips on the radar right

00:32:44.650 --> 00:32:50.309
some an illness a vaccine a move a stressor some

00:32:50.309 --> 00:32:53.650
sort of change right and to kind of blame it

00:32:53.650 --> 00:32:58.150
on that thing feels good because it gives us

00:32:58.150 --> 00:33:01.910
some control but i don't think it's helpful um

00:33:01.910 --> 00:33:04.970
and i i think that you know i always say look

00:33:04.970 --> 00:33:08.029
there's nothing wrong with trying to address

00:33:08.029 --> 00:33:11.069
you know stressors in life and try to minimize

00:33:11.069 --> 00:33:14.430
them but you know i see 18 month olds with severe

00:33:14.430 --> 00:33:16.930
alopecia areata they're not stressed right if

00:33:16.930 --> 00:33:19.890
this were stressed like nobody would have hair

00:33:19.890 --> 00:33:24.140
actually right um so i think it kind of does

00:33:24.140 --> 00:33:27.220
a disservice to our patients to bring that up

00:33:27.220 --> 00:33:29.480
because I literally have, you know, parents come

00:33:29.480 --> 00:33:32.500
in feeling terrible, you know, that their three

00:33:32.500 --> 00:33:35.400
-year -old is stressed because somebody, you

00:33:35.400 --> 00:33:37.319
know, said this in a visit. And it's like, no,

00:33:37.400 --> 00:33:40.359
no, no, this is not your fault, right? Your child

00:33:40.359 --> 00:33:44.559
is not stressed. And again, it's just a thing

00:33:44.559 --> 00:33:46.660
that happens. I know I'll say like some kids

00:33:46.660 --> 00:33:50.059
just get psoriasis. Some kids just get juvenile

00:33:50.059 --> 00:33:52.539
diabetes, right? It's all, you know, these are

00:33:52.539 --> 00:33:55.720
all kind of, similar I think what's you know

00:33:55.720 --> 00:33:58.960
what's tricky is that alopecia areata can wax

00:33:58.960 --> 00:34:01.880
and wane and we see that waxing and waning versus

00:34:01.880 --> 00:34:04.579
you know something like lupus which we know you

00:34:04.579 --> 00:34:06.900
know disease activity can also wax and wane but

00:34:06.900 --> 00:34:10.179
it's not necessarily visual right so that getting

00:34:10.179 --> 00:34:12.280
better and then worse makes us feel like gosh

00:34:12.280 --> 00:34:15.039
there must be something we're interacting with

00:34:15.039 --> 00:34:17.780
in the environment to make this happen you know

00:34:17.780 --> 00:34:20.260
and I always say look in five years I might say

00:34:20.260 --> 00:34:22.480
well that was dumb what I used to say because

00:34:22.480 --> 00:34:26.760
we learn something new. But right now we don't

00:34:26.760 --> 00:34:31.099
have, you know, that smoking gun. So you're in

00:34:31.099 --> 00:34:33.559
a room with your patient. You've determined in

00:34:33.559 --> 00:34:37.019
your mind that they likely have or do have alopecia

00:34:37.019 --> 00:34:41.400
areata. What are you putting down on your doctor's

00:34:41.400 --> 00:34:45.639
chart note that you know is going to be essential

00:34:45.639 --> 00:34:49.780
to capture both for assessment sake, monitoring

00:34:49.780 --> 00:34:52.840
over time, and also what the insurance companies

00:34:52.840 --> 00:34:55.139
are going to be looking at and saying, geez,

00:34:55.280 --> 00:34:57.980
how is this going to affect our ability to manage

00:34:57.980 --> 00:35:02.000
this kid behind the scenes? Yeah. So there's

00:35:02.000 --> 00:35:07.000
sort of a dialogue around assessing disease severity

00:35:07.000 --> 00:35:11.320
in alopecia areata that has sort of come with

00:35:11.320 --> 00:35:14.579
having some approved therapies, right? We sort

00:35:14.579 --> 00:35:17.610
of... predated that a little bit but you know

00:35:17.610 --> 00:35:21.309
the only the primary tool that we that we had

00:35:21.309 --> 00:35:23.349
is something called the SALT score:  the Severity

00:35:23.349 --> 00:35:25.690
of ALopecia Tool, which is really just a measure

00:35:25.690 --> 00:35:28.329
of the amount of the scalp that's involved with

00:35:28.329 --> 00:35:32.449
hair loss so um you know SALT score of 100 is

00:35:32.449 --> 00:35:36.110
a hundred percent scalp hair loss so it's a little

00:35:36.110 --> 00:35:38.789
counterintuitive i think sometimes so um this

00:35:38.789 --> 00:35:41.949
gives us uh you know When somebody has complete

00:35:41.949 --> 00:35:44.230
loss, it's easy. Patients in the middle, it's

00:35:44.230 --> 00:35:47.309
a little trickier. You have to divide the scalp

00:35:47.309 --> 00:35:49.449
into these quadrants, assess the amount of hair

00:35:49.449 --> 00:35:51.369
loss in each quadrant, and then kind of add it

00:35:51.369 --> 00:35:54.190
up. And I think SALT score is important to document

00:35:54.190 --> 00:35:56.269
because it's what's used in all the clinical

00:35:56.269 --> 00:36:01.150
trials as an endpoint. Basically, patients in

00:36:01.150 --> 00:36:03.369
clinical trials, what tends to be looked at is

00:36:03.369 --> 00:36:05.150
the percent of patients who get to a SALT score

00:36:05.150 --> 00:36:09.019
of 20 or less, so 20% or less. scalp hair loss

00:36:09.019 --> 00:36:12.360
or 80% or more coverage. So we have to document

00:36:12.360 --> 00:36:16.599
SALT, but SALT has a lot of limitations, right?

00:36:16.739 --> 00:36:19.280
You know, you have a patient who has 10% scalp

00:36:19.280 --> 00:36:21.940
hair loss and they're also missing their eyebrows

00:36:21.940 --> 00:36:25.389
and eyelashes. That's not... really mild, right?

00:36:25.489 --> 00:36:27.090
Because with SALT technically, you know, classically

00:36:27.090 --> 00:36:30.230
we say over, you know, 50% is "severe." And, and

00:36:30.230 --> 00:36:32.690
which also by itself is a little weirder. I mean,

00:36:32.690 --> 00:36:34.769
there's a wide range, 50 to a hundred percent

00:36:34.769 --> 00:36:38.489
is a huge difference. Yes. So, um, you know,

00:36:38.530 --> 00:36:40.949
we developed something, a group of us who do

00:36:40.949 --> 00:36:43.349
a lot of hair loss, um, something called the

00:36:43.349 --> 00:36:46.590
Alopecia Areata Scale, which was, or AASC that

00:36:46.590 --> 00:36:49.210
was published in the JAAD a few years ago. And

00:36:49.210 --> 00:36:52.380
basically the idea was to have sort of more of

00:36:52.380 --> 00:36:57.159
a holistic assessment of severity. And it's still

00:36:57.159 --> 00:37:00.539
anchored in percent hair loss, but we have these

00:37:00.539 --> 00:37:03.420
sort of modifying factors like eyebrow eyelash

00:37:03.420 --> 00:37:07.219
involvement, negative impact on psychosocial

00:37:07.219 --> 00:37:10.840
functioning, positive pull test consistent with

00:37:10.840 --> 00:37:13.179
rapid hair loss, lack of response to therapy.

00:37:13.239 --> 00:37:15.619
So all these other things that can sort of bump

00:37:15.619 --> 00:37:19.230
you up a level if you have... less scalp hair

00:37:19.230 --> 00:37:24.929
loss. And for me, I really don't believe in mild

00:37:24.929 --> 00:37:29.909
alopecia areata. It's very rare for a patient

00:37:29.909 --> 00:37:33.190
to experience alopecia areata as mild. Somebody

00:37:33.190 --> 00:37:36.849
with one patch and a head full of hair, okay,

00:37:36.909 --> 00:37:41.210
maybe, but the majority of patients find it very

00:37:41.210 --> 00:37:44.190
distressing. And so for me, the severity is largely

00:37:44.190 --> 00:37:47.519
about... the patient's experience of it, right?

00:37:48.260 --> 00:37:51.280
And how is it, you know, how is it affecting

00:37:51.280 --> 00:37:53.659
the way they interact with the world and vice

00:37:53.659 --> 00:37:58.320
versa? And, you know, importantly, these medications

00:37:58.320 --> 00:38:01.139
we have are approved for severe alopecia areata.

00:38:01.179 --> 00:38:03.840
Now, insurance companies often want the patient

00:38:03.840 --> 00:38:06.840
to have a SALT score of 50 or more, 50 or more,

00:38:06.960 --> 00:38:08.940
you know, percent scalp hair loss, because that

00:38:08.940 --> 00:38:11.380
was what inclusion criteria in the clinical trials

00:38:11.380 --> 00:38:14.119
was. But, you know, there's a range of severe,

00:38:14.300 --> 00:38:16.940
right? And so for me, if I think a patient has

00:38:16.940 --> 00:38:19.300
severe disease, and for sure, if they have severe

00:38:19.300 --> 00:38:21.340
disease by the alopecia areata scale, I'm going

00:38:21.340 --> 00:38:23.559
to use that to argue with the insurance company

00:38:23.559 --> 00:38:26.099
that this is, you know, this treatment's appropriate

00:38:26.099 --> 00:38:29.639
for this patient. Yeah, and it's great that you

00:38:29.639 --> 00:38:31.739
use the term argue with the insurance company.

00:38:31.900 --> 00:38:35.920
The last two patients I've had to try to get

00:38:35.920 --> 00:38:40.840
approved for systemic medication, one was not

00:38:41.519 --> 00:38:44.900
a physician, the other was a physician in a in

00:38:44.900 --> 00:38:47.300
a quote unquote "peer to peer." So at least maybe

00:38:47.300 --> 00:38:49.559
in that first example, it wasn't truly a peer.

00:38:49.679 --> 00:38:53.239
But the experts that I was assigned to speak

00:38:53.239 --> 00:38:56.400
with, two separate patients, two separate insurance

00:38:56.400 --> 00:38:59.539
companies told me that the medicine we were requesting

00:38:59.539 --> 00:39:03.780
was not approved for alopecia areata because

00:39:03.780 --> 00:39:08.630
alopecia areata is a "cosmetic" condition. And

00:39:08.630 --> 00:39:11.489
it drove me absolutely insane to have to sit

00:39:11.489 --> 00:39:14.710
here and talk to someone who, if this was happening

00:39:14.710 --> 00:39:19.170
to their kid, you know, and I know, the term

00:39:19.170 --> 00:39:21.369
"cosmetic" would be the farthest thing from their

00:39:21.369 --> 00:39:24.989
mind. But behind the safety of a telephone, they

00:39:24.989 --> 00:39:29.530
were able to argue this. And I got caught - the

00:39:29.530 --> 00:39:33.110
first one - because they asked me, "Well, what function

00:39:33.110 --> 00:39:36.440
are you losing in this condition?" And I just

00:39:36.440 --> 00:39:39.019
wasn't prepared for it. I mean, I geared up for

00:39:39.019 --> 00:39:42.760
it after that and had a couple of responses.

00:39:43.099 --> 00:39:46.079
"Well, you know, the eyebrows, the eyelashes trap

00:39:46.079 --> 00:39:51.409
dust. They protect our eyes, the scalp. acts

00:39:51.409 --> 00:39:55.050
as a sun protection or the hair on the scalp

00:39:55.050 --> 00:39:59.150
acts as sun protection. It might act as a thermoregulator."

00:39:59.389 --> 00:40:01.309
I was trying my hardest to come up with... How

00:40:01.309 --> 00:40:04.010
do you answer that question when someone makes

00:40:04.010 --> 00:40:06.690
that argument to you that this is just a cosmetic

00:40:06.690 --> 00:40:09.929
condition? Yeah, I mean, you're totally right.

00:40:09.989 --> 00:40:12.170
It's cosmetic until it's you or your family.

00:40:12.250 --> 00:40:18.809
I think, you know, it's really hard to sort of...

00:40:19.320 --> 00:40:22.400
just understand the experience unless you've

00:40:22.400 --> 00:40:27.139
lived it. But there's kind of nothing like it,

00:40:27.179 --> 00:40:30.820
actually, in terms of how absolutely devastating

00:40:30.820 --> 00:40:33.059
and life altering it can be. And so, you know,

00:40:33.059 --> 00:40:35.940
cosmetic, when I think of cosmetic, I think of

00:40:35.940 --> 00:40:38.039
something that's meant to enhance appearance,

00:40:38.440 --> 00:40:40.920
right? Cosmetic procedures are, you know, we're

00:40:40.920 --> 00:40:44.039
trying to enhance appearance, right? And patients

00:40:44.039 --> 00:40:46.300
with alopecia areata, they are not looking to

00:40:46.300 --> 00:40:48.159
enhance their appearance. They are just looking

00:40:48.650 --> 00:40:51.210
to restore normal right they are just looking

00:40:51.210 --> 00:40:57.090
for normalcy and so um you know there is a function

00:40:57.090 --> 00:40:59.750
to hair right some of the things that you said

00:40:59.750 --> 00:41:02.449
it's evolutionarily conserved on our you know

00:41:02.449 --> 00:41:07.369
above our neck basically for a reason um so there

00:41:07.369 --> 00:41:09.730
are there is some function but but also this

00:41:09.730 --> 00:41:13.090
is an autoimmune disease right this is there's

00:41:13.090 --> 00:41:15.889
a clear you know scientific basis for this and

00:41:15.889 --> 00:41:19.610
i think with that cosmetic argument is, you know,

00:41:19.630 --> 00:41:21.650
especially for dermatology, that could be a pretty

00:41:21.650 --> 00:41:24.869
slippery slope, right? So, we don't treat acne

00:41:24.869 --> 00:41:27.769
that's not painful because it's not cosmetic.

00:41:28.030 --> 00:41:31.030
We don't treat granuloma annulare? We don't treat

00:41:31.030 --> 00:41:33.989
psoriasis that's not itchy, right? And so, you

00:41:33.989 --> 00:41:38.250
know, if you really get into that, I think, you

00:41:38.250 --> 00:41:40.889
know, people might say, oh, yeah, you know, I

00:41:40.889 --> 00:41:45.110
guess you're right. But I think, importantly,

00:41:45.369 --> 00:41:49.219
alopecia areata is different from you know, androgenetic

00:41:49.219 --> 00:41:52.440
alopecia in a 50-year-old male, right? Pattern

00:41:52.440 --> 00:41:54.960
hair loss. Like hair loss is not hair loss. Are

00:41:54.960 --> 00:41:57.739
you talking to me? Yeah. You have a great head

00:41:57.739 --> 00:42:02.000
of hair. But, you know, I think, and then just,

00:42:02.019 --> 00:42:06.239
you know, citing literature that about what this,

00:42:06.260 --> 00:42:09.320
you know, what this means for patients and the

00:42:09.320 --> 00:42:12.900
impact on. on their life and increased rates

00:42:12.900 --> 00:42:17.000
of suicidal ideation in these kids. And, you

00:42:17.000 --> 00:42:20.239
know, for me, I often have, you know, in my notes

00:42:20.239 --> 00:42:23.699
and then with appeals, I write about things that

00:42:23.699 --> 00:42:25.880
the patient used to do that they don't anymore,

00:42:26.119 --> 00:42:29.179
things that they say about it, because I think

00:42:29.179 --> 00:42:31.659
those things can be really, really powerful,

00:42:31.739 --> 00:42:35.460
you know, more so than me just saying, this is

00:42:35.460 --> 00:42:39.090
a big deal. I'm just the idea that a teenager

00:42:39.090 --> 00:42:42.090
and I'm picking on teenagers because they're

00:42:42.090 --> 00:42:44.570
the they're the obviously affected population,

00:42:44.789 --> 00:42:47.570
but really could be anybody. But they're trying

00:42:47.570 --> 00:42:50.269
their hardest, to your point, just to fit in.

00:42:50.409 --> 00:42:53.070
I mean, they just want to be normal and get through

00:42:53.070 --> 00:42:57.070
the most awkward time of their lives. And something

00:42:57.070 --> 00:42:59.809
like this happens to them. And to be told that

00:42:59.809 --> 00:43:01.690
it doesn't mean anything, it's just "cosmetic"

00:43:01.690 --> 00:43:05.489
is such an extra blow. And it drives me crazy.

00:43:06.119 --> 00:43:10.000
I guess I can't say that I'm winning the battle,

00:43:10.079 --> 00:43:13.440
but at least we're in the fight for it. And the

00:43:13.440 --> 00:43:17.059
neat thing about this is why is it important

00:43:17.059 --> 00:43:20.340
to win this argument? Because I tell my patients

00:43:20.340 --> 00:43:24.099
I've witnessed four miracles in the 20 years

00:43:24.099 --> 00:43:27.360
I've been doing dermatology. Propranolol for

00:43:27.360 --> 00:43:31.840
hemangiomas, dupilumab and associated medicines

00:43:31.840 --> 00:43:35.550
like that for atopic derm. the psoriasis medicines,

00:43:35.630 --> 00:43:38.469
and now these medicines that we have available

00:43:38.469 --> 00:43:41.829
to us to treat alopecia areata, where before

00:43:41.829 --> 00:43:45.269
you just kind of would cross your fingers and

00:43:45.269 --> 00:43:48.550
try some close-to-witchcraft stuff at times and

00:43:48.550 --> 00:43:53.210
not get very far. So what is your approach to

00:43:53.210 --> 00:43:55.230
treating a patient with alopecia areata? Let's

00:43:55.230 --> 00:43:58.349
start on the lower scale. I agree with you. There

00:43:58.349 --> 00:44:02.719
is no mild, but if you had one, or two patches,

00:44:02.860 --> 00:44:06.280
small patches, dime, nickel, quarter size, what

00:44:06.280 --> 00:44:08.800
are you doing for that patient? What's your first

00:44:08.800 --> 00:44:13.780
go-to intervention? And are you combining modalities?

00:44:14.460 --> 00:44:16.599
Treatment is really complicated because there

00:44:16.599 --> 00:44:21.440
isn't this one -size -fits -all. But a lot of

00:44:21.440 --> 00:44:26.199
factors, how old is the patient? How much is

00:44:26.199 --> 00:44:28.960
it affecting them? Have they had it before? Do

00:44:28.960 --> 00:44:30.940
they have comorbidities? All these things kind

00:44:30.940 --> 00:44:37.929
of play in. onset of a patch or two, depending

00:44:37.929 --> 00:44:40.769
on the age. So. for mild hair loss, which we define

00:44:40.769 --> 00:44:45.789
as less than 20%, intralesional corticosteroids

00:44:45.789 --> 00:44:49.570
are the mainstay of treatment for adults. And

00:44:49.570 --> 00:44:52.750
then I say, and kids who can tolerate it. So

00:44:52.750 --> 00:44:56.909
for me, I am not bringing up injections for kids

00:44:56.909 --> 00:45:00.670
in elementary school. I just think the treatment

00:45:00.670 --> 00:45:05.369
should never be worse than the disease. And while

00:45:05.369 --> 00:45:07.849
it can often be very effective, it's uncomfortable

00:45:07.849 --> 00:45:10.929
and it's traumatic and scary. And, you know,

00:45:10.969 --> 00:45:14.670
so I think teenagers, I'll bring it up, but I'll

00:45:14.670 --> 00:45:17.630
say, look, if that sounds awful to you, we don't

00:45:17.630 --> 00:45:19.730
have to do that, right, to give them, you know,

00:45:19.769 --> 00:45:23.329
some agency. So I always involve, you know, kids

00:45:23.329 --> 00:45:26.469
and obviously families in the decision. You know,

00:45:26.469 --> 00:45:30.530
topicals, if you look at data, aren't super useful.

00:45:30.610 --> 00:45:34.619
I would say kids do. better in general with topicals

00:45:34.619 --> 00:45:37.619
than adults. But oftentimes in these situations,

00:45:37.800 --> 00:45:39.920
someone gets better, we pat ourselves on the

00:45:39.920 --> 00:45:41.019
back, but really they were just going to get

00:45:41.019 --> 00:45:44.000
better anyways. So rates of spontaneous remission

00:45:44.000 --> 00:45:48.920
and very mild patchy disease are fairly high.

00:45:49.159 --> 00:45:54.199
So I think often when I'm doing topicals, if

00:45:54.199 --> 00:45:56.000
it's really just one patch, I probably would

00:45:56.000 --> 00:45:59.500
just do a super potent topical steroid. If it's

00:45:59.500 --> 00:46:05.420
more patches, I might add topical minoxidil,

00:46:05.460 --> 00:46:07.619
which I didn't really used to use much of, but

00:46:07.619 --> 00:46:10.380
actually there's some data for oral minoxidil,

00:46:10.420 --> 00:46:13.219
even as monotherapy for alopecia ureata. So there

00:46:13.219 --> 00:46:15.820
is this interesting role there. And it's like

00:46:15.820 --> 00:46:18.820
these parents tend to be really motivated and

00:46:18.820 --> 00:46:20.739
willing to do it. So if you're putting one thing

00:46:20.739 --> 00:46:23.039
on, might as well put two things on, right? And

00:46:23.039 --> 00:46:26.199
because it takes so long to see improvement,

00:46:26.320 --> 00:46:30.440
I do often sort of... throw the book at it with

00:46:30.440 --> 00:46:33.679
benign things right out of the gate because that

00:46:33.679 --> 00:46:35.559
way if in three or four months we haven't made

00:46:35.559 --> 00:46:37.739
any improvement we don't have to say well well

00:46:37.739 --> 00:46:39.960
now let's add this or now let's add that right

00:46:39.960 --> 00:46:44.079
you already got there yeah do you so so just

00:46:44.079 --> 00:46:46.019
to be clear if you had a patient that could do

00:46:46.019 --> 00:46:48.119
injections and that's the intralesional that

00:46:48.119 --> 00:46:51.800
you were referring to or an ultra potent topical

00:46:51.800 --> 00:46:55.059
steroid you feel the injections everything else

00:46:55.059 --> 00:46:57.559
being equal, do work better than the topicals?

00:46:57.579 --> 00:46:59.619
Yeah. And I would probably still, if they were

00:46:59.619 --> 00:47:01.699
willing to probably have them do topical at home

00:47:01.699 --> 00:47:03.820
in between. That's what I was going to ask you.

00:47:03.840 --> 00:47:05.780
That's kind of what I do. I still, I still cheat

00:47:05.780 --> 00:47:13.019
and have them do it. And again, because it just,

00:47:13.039 --> 00:47:16.679
it takes a long time. Yeah. Do you have any use

00:47:16.679 --> 00:47:19.389
for anthralin? That's one we used to do. You

00:47:19.389 --> 00:47:22.789
know, now I really, I cannot remember the last

00:47:22.789 --> 00:47:27.090
time that I used anthralin. So for people who

00:47:27.090 --> 00:47:29.610
don't know, anthralin is, it's actually an old

00:47:29.610 --> 00:47:32.929
school psoriasis medicine. It's sort of a tar

00:47:32.929 --> 00:47:35.289
-based preparation that can be very irritating.

00:47:36.230 --> 00:47:40.010
And the idea behind it, what sort of opposite

00:47:40.010 --> 00:47:42.690
corticosteroids that, you know, we try to go

00:47:42.690 --> 00:47:44.909
in and get rid of the inflammation. And the thought

00:47:44.909 --> 00:47:46.869
behind anthralin is that we're going in, we're...

00:47:47.079 --> 00:47:49.059
we're causing irritation. So sort of bringing

00:47:49.059 --> 00:47:51.119
a different part of the immune system in to kind

00:47:51.119 --> 00:47:54.179
of like muscle out the bad guys. And I think

00:47:54.179 --> 00:47:57.099
anthralin is, you know, I've seen it be very

00:47:57.099 --> 00:48:00.420
effective. It's really cumbersome. It's time

00:48:00.420 --> 00:48:03.679
consuming. It stains your, you know, your hands

00:48:03.679 --> 00:48:06.739
and your fixtures and your pillowcase. And I

00:48:06.739 --> 00:48:09.219
think we just have better treatments now. Like

00:48:09.219 --> 00:48:11.920
those are, that's something you do when you don't

00:48:11.920 --> 00:48:15.130
have. other options, right? It's the same thing

00:48:15.130 --> 00:48:17.409
with people who are going and having, you know,

00:48:17.409 --> 00:48:22.010
50 % of their scalp injected with corticosteroids.

00:48:22.010 --> 00:48:24.070
Like that's what you do when you have nothing

00:48:24.070 --> 00:48:27.929
else, right? And also that goes to show you how

00:48:27.929 --> 00:48:30.389
awful this disease is because we have patients,

00:48:30.469 --> 00:48:33.449
you know, with psoriasis or atopic dermatitis

00:48:33.449 --> 00:48:35.590
who don't want to do one injection, you know,

00:48:35.590 --> 00:48:37.489
a month or every two months. And then here we

00:48:37.489 --> 00:48:39.940
have patients going and having, you know, 50

00:48:39.940 --> 00:48:42.500
needle pokes once a month in their scalp. Right.

00:48:42.599 --> 00:48:44.539
But that, I think we're going to kind of look

00:48:44.539 --> 00:48:47.639
back and be like, that was almost barbaric. Um,

00:48:47.780 --> 00:48:51.820
but again, nothing else. Yeah. How about a contact

00:48:51.820 --> 00:48:53.679
immunotherapy? Is that anything that you still

00:48:53.679 --> 00:48:56.019
use? Yeah. Again, that is, you know, I think

00:48:56.019 --> 00:49:00.420
I've seen, you know, a lot of kids sort of over

00:49:00.420 --> 00:49:03.659
the years, um, who've had, you know, really terrible

00:49:03.659 --> 00:49:05.980
reactions. And especially, I mean, I've seen

00:49:05.980 --> 00:49:10.679
young kids treated with this and I think it's

00:49:10.679 --> 00:49:13.019
already hard to have alopecia and then you're

00:49:13.019 --> 00:49:17.000
uncomfortable also. It just doesn't make sense.

00:49:17.199 --> 00:49:21.039
No, no. And that leads us to my fourth miracle,

00:49:21.199 --> 00:49:24.500
right? These new medicines, JAK inhibitors, that

00:49:24.500 --> 00:49:27.159
you had such a tremendous role in bringing to

00:49:27.159 --> 00:49:30.500
the forefront of everyone's attention. How do

00:49:30.500 --> 00:49:33.199
they work in general? And which ones are you

00:49:33.199 --> 00:49:36.380
seeing the most success with? So JAK inhibitors

00:49:36.380 --> 00:49:38.940
are, they're small molecules, they're pills.

00:49:39.440 --> 00:49:43.820
And basically they are the most targeted treatment

00:49:43.820 --> 00:49:46.019
we have right now for alopecia areata. So they

00:49:46.019 --> 00:49:50.699
basically directly target a group of proteins

00:49:50.699 --> 00:49:53.739
called JAKs that essentially transmit messages

00:49:53.739 --> 00:49:56.019
in the immune system. And these are the proteins

00:49:56.019 --> 00:49:59.059
that are responsible for sort of... keeping up

00:49:59.059 --> 00:50:02.179
this perpetual positive feedback loop of immune

00:50:02.179 --> 00:50:06.219
cells that keeps hair away. And so with these

00:50:06.219 --> 00:50:09.099
medicines, you can dial that inflammation down

00:50:09.099 --> 00:50:11.860
and oftentimes those immune cells kind of go

00:50:11.860 --> 00:50:14.539
away and you can have regrowth of hair. So we

00:50:14.539 --> 00:50:17.599
now have, there are three FDA approved options.

00:50:17.719 --> 00:50:21.250
The first was baricitinib, that's approved. Presently

00:50:21.250 --> 00:50:25.849
only 18 and up, but they have some really exciting

00:50:25.849 --> 00:50:28.449
data in the adolescent population, so hopefully

00:50:28.449 --> 00:50:32.800
we'll see an approval 12 and up. you know, in

00:50:32.800 --> 00:50:35.579
the foreseeable future. And that's a once a day

00:50:35.579 --> 00:50:38.739
pill? That's a once a day, yep. Olumiant is the

00:50:38.739 --> 00:50:41.119
brand name. And then the next medicine that was

00:50:41.119 --> 00:50:44.260
approved is ritlecitinib, or as you mentioned

00:50:44.260 --> 00:50:47.280
before, Litfulo. That is approved ages 12 and

00:50:47.280 --> 00:50:50.000
up for severe alopecia rata. And then we have

00:50:50.000 --> 00:50:53.300
one more in adults now called lexelvi or deuruxolitinib.

00:50:53.639 --> 00:50:57.119
And that's in trials in adolescents also. So,

00:50:57.139 --> 00:51:01.219
you know, having an approved therapy has been...

00:51:01.519 --> 00:51:06.340
really game -changing, right? So a lot of patients

00:51:06.340 --> 00:51:09.099
now are getting treated. A lot of my practice

00:51:09.099 --> 00:51:13.659
now is patients under 12 for whom, you know,

00:51:13.659 --> 00:51:15.800
a lot of dermatologists aren't yet comfortable

00:51:15.800 --> 00:51:18.900
using these medicines. But, you know, there are

00:51:18.900 --> 00:51:20.840
multiple JAK inhibitors that are approved down

00:51:20.840 --> 00:51:24.159
to age two for other indications. Olumiant or

00:51:24.159 --> 00:51:26.340
baricitinib, for example, is approved in over

00:51:26.340 --> 00:51:29.579
40 countries down to age two for juvenile arthritis

00:51:29.579 --> 00:51:32.619
and eczema, actually. And something I often find

00:51:32.619 --> 00:51:35.019
myself saying in the clinic is, if this were

00:51:35.019 --> 00:51:39.340
arthritis, we wouldn't be having a big discussion

00:51:39.340 --> 00:51:41.820
about this, right? And I think this alopecia areata

00:51:41.820 --> 00:51:46.300
can be as debilitating, if not more, than arthritis,

00:51:46.380 --> 00:51:48.519
just in a little bit of a different way, right?

00:51:48.599 --> 00:51:52.360
And so I think, you know, with time... Hopefully

00:51:52.360 --> 00:51:54.880
more patients will get treated. You know, baricitinib

00:51:54.880 --> 00:51:57.260
and ritlecitinib will be studied down to six.

00:51:57.860 --> 00:51:59.960
So hopefully we'll even see approvals in that

00:51:59.960 --> 00:52:01.719
elementary school age group, right? And that's

00:52:01.719 --> 00:52:03.900
really, really important, actually, because what

00:52:03.900 --> 00:52:05.980
we're learning is that, you know, oftentimes

00:52:05.980 --> 00:52:07.860
you read in a textbook, this is a reversible

00:52:07.860 --> 00:52:10.760
disease. Well, in patients with very severe disease,

00:52:10.960 --> 00:52:13.619
so complete or near complete hair loss, if it's

00:52:13.619 --> 00:52:17.920
been three and a half to four years after that

00:52:17.920 --> 00:52:20.679
period of time with no hair, essentially. After

00:52:20.679 --> 00:52:22.599
that period of time, the chance of responding

00:52:22.599 --> 00:52:24.980
to these drugs really starts to decrease. So

00:52:24.980 --> 00:52:27.880
there is a window of opportunity. And because

00:52:27.880 --> 00:52:30.340
a lot of patients are, you know, they lose all

00:52:30.340 --> 00:52:32.599
their hair at age three or four or five, right?

00:52:32.679 --> 00:52:35.519
If somebody isn't treating them or waiting until

00:52:35.519 --> 00:52:37.619
there's an approved treatment, they may actually

00:52:37.619 --> 00:52:40.159
lose their chance at ever having hair. So this

00:52:40.159 --> 00:52:44.679
is... It's just really important that these medicines

00:52:44.679 --> 00:52:47.099
get studied and hopefully eventually get approved.

00:52:47.320 --> 00:52:50.300
But I always say off-label doesn't mean off

00:52:50.300 --> 00:52:54.179
-limits. And so oftentimes we can get them for

00:52:54.179 --> 00:52:56.679
kids who really need them. But for sure, it's

00:52:56.679 --> 00:53:00.130
often a battle. Right. So what's your approach?

00:53:00.309 --> 00:53:02.250
Let's say you have someone on a JAK inhibitor

00:53:02.250 --> 00:53:06.210
that's approved and you have this amazing success,

00:53:06.329 --> 00:53:09.090
maybe like the kid I referenced earlier. He gets

00:53:09.090 --> 00:53:11.210
all of his hair back. It's looking luxurious.

00:53:12.010 --> 00:53:16.849
What do you do once he has 100% hair regrowth?

00:53:17.070 --> 00:53:19.110
What do you do from a management perspective

00:53:19.110 --> 00:53:22.250
and a documentation perspective so that the insurance

00:53:22.250 --> 00:53:24.309
company doesn't say, oh, you fixed him. We can

00:53:24.309 --> 00:53:27.409
stop the medicine now. Right. Well, this, you

00:53:27.409 --> 00:53:29.929
know, it's so funny because sort of every lecture

00:53:29.929 --> 00:53:32.110
you give, people always ask what happens when

00:53:32.110 --> 00:53:35.369
you stop. Right. And it's interesting because

00:53:35.369 --> 00:53:38.349
I don't hear that question a lot in lectures

00:53:38.349 --> 00:53:40.889
about atopic dermatitis or psoriasis, where we

00:53:40.889 --> 00:53:42.789
just kind of understand that these are chronic

00:53:42.789 --> 00:53:45.329
diseases that require chronic treatment. And

00:53:45.329 --> 00:53:48.010
that's the same for alopecia areata. So, you

00:53:48.010 --> 00:53:52.059
know, what's interesting is it's. not 100% the

00:53:52.059 --> 00:53:55.199
case that everybody will lose hair if they discontinue,

00:53:55.239 --> 00:53:59.880
but most patients will. So stopping the medicine

00:53:59.880 --> 00:54:05.219
abruptly is never a good idea. And for me, I

00:54:05.219 --> 00:54:09.920
think about a taper really mostly when families

00:54:09.920 --> 00:54:11.659
are interested in that. When I was doing this

00:54:11.659 --> 00:54:15.099
a long time ago and it was really sort of outside

00:54:15.099 --> 00:54:16.980
the box i had more of a feeling like okay i really

00:54:16.980 --> 00:54:18.659
need to get kids down to the minimal effective

00:54:18.659 --> 00:54:22.079
dose and again these drugs are approved in other

00:54:22.079 --> 00:54:24.960
chronic conditions in these age groups and so

00:54:24.960 --> 00:54:30.159
um you know many patients do need them, at least

00:54:30.159 --> 00:54:32.099
for the foreseeable future or until something

00:54:32.099 --> 00:54:35.219
else comes along. But certainly never stopping

00:54:35.219 --> 00:54:37.780
abruptly, never just cutting the dose in half.

00:54:37.920 --> 00:54:40.219
If you do want to taper, when I give talks, I

00:54:40.219 --> 00:54:41.920
say it's the slowest taper you've ever done in

00:54:41.920 --> 00:54:44.539
your life for anything. Because again, any change

00:54:44.539 --> 00:54:46.559
you make, you have to wait to see what's going

00:54:46.559 --> 00:54:49.940
to happen with that, right? And so if a patient

00:54:49.940 --> 00:54:52.739
comes in and says, oh, I stopped taking it and

00:54:52.739 --> 00:54:54.599
I'm doing fine. If they just stopped it a month

00:54:54.599 --> 00:54:58.260
ago, you know, we have no idea, right? If you

00:54:58.260 --> 00:55:00.719
look at discontinuation data, it's really like

00:55:00.719 --> 00:55:03.400
eight weeks or so that patients really, you start

00:55:03.400 --> 00:55:05.900
to see it. But not everybody, some people will

00:55:05.900 --> 00:55:09.539
maintain for longer and then lose hair. How do

00:55:09.539 --> 00:55:11.159
you even taper it? I mean, if you're talking

00:55:11.159 --> 00:55:14.420
about like 50 milligrams a day, what do you do?

00:55:14.679 --> 00:55:20.019
Yeah, I typically don't, but sometimes. you know,

00:55:20.059 --> 00:55:21.719
families really want to do it or, you know, I

00:55:21.719 --> 00:55:24.219
think in cases where we've gotten in very early

00:55:24.219 --> 00:55:26.099
in the disease course, you know, those patients

00:55:26.099 --> 00:55:27.980
may have a better chance of being able to come

00:55:27.980 --> 00:55:30.559
off and, you know, we don't have time to get

00:55:30.559 --> 00:55:32.579
into it, but we do have a little bit of data

00:55:32.579 --> 00:55:34.440
about what happens when people stop medicine.

00:55:34.480 --> 00:55:37.019
And there is a small proportion of patients who

00:55:37.019 --> 00:55:39.440
will maintain. So, you know, if I have a patient

00:55:39.440 --> 00:55:45.360
taking, you know, a once a day medication like

00:55:45.360 --> 00:55:49.119
Ritlecitinib, I'll have them, you know, maybe

00:55:49.659 --> 00:55:53.480
just drop one or two pills a week for a good

00:55:53.480 --> 00:55:56.960
four to six months. Ritlecitinib is a capsule,

00:55:57.079 --> 00:55:59.880
so you can't, you know, you can't cut it in half.

00:56:00.079 --> 00:56:01.860
You know, sometimes with tablets, we can cut

00:56:01.860 --> 00:56:05.800
it in half and have a little more, you know,

00:56:05.800 --> 00:56:08.159
sort of elegant approach to the taper, but it's

00:56:08.159 --> 00:56:11.820
got to be very slow. Tell me if I'm Looney Tunes,

00:56:11.900 --> 00:56:16.900
but my approach has been once I get 100% regrowth,

00:56:17.000 --> 00:56:20.730
it's got to really be 100%. then I caution the

00:56:20.730 --> 00:56:22.130
patients that I'm probably going to keep them

00:56:22.130 --> 00:56:24.409
on the medicine for at least a year. And then

00:56:24.409 --> 00:56:26.670
we'll have the discussion about tapering. And

00:56:26.670 --> 00:56:29.829
the way I taper would be if it's a once -a -day

00:56:29.829 --> 00:56:32.530
medicine, I would go to "every other day" and then

00:56:32.530 --> 00:56:35.769
maybe "every other other day," maybe "Monday, Friday,"

00:56:35.769 --> 00:56:37.889
and see if all of a sudden things are falling

00:56:37.889 --> 00:56:40.650
out. If it's a twice-a-day medicine, and I

00:56:40.650 --> 00:56:42.949
think there's only one of the jacks, right? It's

00:56:42.949 --> 00:56:46.570
twice a day. then maybe I would drop it to once

00:56:46.570 --> 00:56:48.510
a day for a month or two and just see if it changed

00:56:48.510 --> 00:56:50.489
anything and then come off of it. But is that

00:56:50.489 --> 00:56:53.329
a crazy way to do it? No, I mean, I definitely

00:56:53.329 --> 00:56:56.789
don't think about it until somebody has had complete

00:56:56.789 --> 00:57:00.170
regrowth. I tell people for, you know, at least

00:57:00.170 --> 00:57:02.469
a year. Because again, sometimes we see waxing

00:57:02.469 --> 00:57:04.230
and waning. It's not uncommon for patients to

00:57:04.230 --> 00:57:06.670
get patches, you know, even when they've had

00:57:06.670 --> 00:57:08.989
good regrowth, right? So we kind of want to make

00:57:08.989 --> 00:57:12.389
sure this is really... real and stable before

00:57:12.389 --> 00:57:14.730
we do it. And I think the patients who have the

00:57:14.730 --> 00:57:18.769
best chance of successfully down titrating are

00:57:18.769 --> 00:57:22.889
patients who have lesser severity, especially

00:57:22.889 --> 00:57:26.210
less than 95% hair loss. So patients with 95

00:57:26.210 --> 00:57:28.469
to 100% hair loss, it's just a different category.

00:57:28.510 --> 00:57:32.650
They respond less well, they take longer. And

00:57:32.650 --> 00:57:34.969
so patients with lesser severity and then lesser

00:57:36.199 --> 00:57:39.019
what we call duration of current episodes. So

00:57:39.019 --> 00:57:41.960
patients where you're starting earlier on in

00:57:41.960 --> 00:57:44.480
the process. So if you have somebody who kind

00:57:44.480 --> 00:57:48.159
of has those things in their favor, then maybe

00:57:48.159 --> 00:57:50.480
it's someone you feel more comfortable initiating

00:57:50.480 --> 00:57:53.019
a taper. But again, the stakes are very

00:57:53.019 --> 00:57:54.960
high with hair. You know, somebody spent two

00:57:54.960 --> 00:57:56.880
years growing their hair to a place where they...

00:57:57.210 --> 00:57:59.670
are finally comfortable not wearing a wig if

00:57:59.670 --> 00:58:01.530
they lose hair like all of a sudden they're back

00:58:01.530 --> 00:58:04.309
in time a very long time right you kind of can't

00:58:04.309 --> 00:58:06.150
apply the same rules to alopecia that you apply

00:58:06.150 --> 00:58:08.849
to atopic dermatitis or psoriasis where if you

00:58:08.849 --> 00:58:11.190
stop a drug to see what happens someone flares

00:58:11.190 --> 00:58:13.030
well you just get back on and probably in a month

00:58:13.030 --> 00:58:16.170
or two you're where you were before well it's

00:58:16.170 --> 00:58:18.230
great that you mentioned atopic dermatitis there

00:58:18.230 --> 00:58:20.730
is an overlap we talked about that or we see

00:58:20.730 --> 00:58:23.050
this condition atopic dermatitis in patients

00:58:23.050 --> 00:58:25.449
with alopecia areata and vice versa more than

00:58:25.449 --> 00:58:28.340
the normal population. And there certainly have

00:58:28.340 --> 00:58:32.300
been reports that dupilumab is being used, obviously

00:58:32.300 --> 00:58:34.539
for atopic dermatitis. It was my second miracle.

00:58:34.739 --> 00:58:39.760
But also it's been used for patients with alopecia

00:58:39.760 --> 00:58:43.880
areata. I've had now two families, and I say

00:58:43.880 --> 00:58:45.940
families very specifically, it was a brother

00:58:45.940 --> 00:58:49.059
and sister, different ages, one family. The second

00:58:49.059 --> 00:58:53.460
family were identical twin. sisters, who had

00:58:53.460 --> 00:58:58.260
both very severe eczema and alopecia totalis.

00:58:58.679 --> 00:59:01.920
And they were under 12 years old. I have no other

00:59:01.920 --> 00:59:05.260
options from the FDA's perspective. I put them

00:59:05.260 --> 00:59:08.300
on dupilumab. A, is that the right thing to do?

00:59:08.480 --> 00:59:11.219
And B, what are you expecting when you're using

00:59:11.219 --> 00:59:13.980
a medicine like that? Yeah. I mean, the dupilumab

00:59:13.980 --> 00:59:17.360
story is really interesting because, early on,

00:59:17.380 --> 00:59:20.260
after its approval for atopic dermatitis, there

00:59:20.260 --> 00:59:22.300
were some reports of people actually developing

00:59:22.300 --> 00:59:24.699
alopecia areata when treated for eczema, but

00:59:24.699 --> 00:59:26.400
then there were also reports of patients having

00:59:26.400 --> 00:59:30.400
regrowth. And so if you take all comers, dupilumab

00:59:30.400 --> 00:59:32.400
is not going to be very effective for alopecia

00:59:32.400 --> 00:59:35.739
areata. However, if you select the right patient,

00:59:35.840 --> 00:59:39.320
so someone with severe atopic dermatitis, other

00:59:39.320 --> 00:59:44.460
atopic comorbidities like asthma, allergies,

00:59:44.760 --> 00:59:47.519
strong family... history of these things or some

00:59:47.519 --> 00:59:50.739
data to suggest elevated IgE is kind of a good

00:59:50.739 --> 00:59:54.960
marker. And in my experience, young patients

00:59:54.960 --> 00:59:58.860
often will do very well. It's really interesting.

00:59:59.059 --> 01:00:01.480
It's almost like there's, you know, it's a different

01:00:01.480 --> 01:00:04.420
flavor of alopecia areata because based on the

01:00:04.420 --> 01:00:07.039
mechanism and what we understand about alopecia

01:00:07.039 --> 01:00:09.280
areata, it doesn't really make sense that it

01:00:09.280 --> 01:00:13.070
works, but it's like in those patients that inflammation,

01:00:13.250 --> 01:00:15.289
you know, from the eczema, asthma, allergies,

01:00:15.369 --> 01:00:17.510
et cetera, is kind of what's tipping the scales.

01:00:17.630 --> 01:00:20.710
And so, yes, for sure. I mean, dupilumab, great

01:00:20.710 --> 01:00:23.469
safety profile, approved for eczema down to six

01:00:23.469 --> 01:00:28.230
months of age and can be a very successful option

01:00:28.230 --> 01:00:32.090
in the right patients. How about the flip of

01:00:32.090 --> 01:00:35.110
that as we wind up here, where you have a patient

01:00:35.110 --> 01:00:37.710
with severe enough eczema that they're already

01:00:37.710 --> 01:00:40.849
on dupilumab? Their eczema is being treated with

01:00:40.849 --> 01:00:44.989
that medicine. But yet during the course of just

01:00:44.989 --> 01:00:47.150
their normal age progression, they're getting

01:00:47.150 --> 01:00:50.010
older, they develop alopecia areata in the setting

01:00:50.010 --> 01:00:54.030
of being on dupilumab. Are you thinking, geez,

01:00:54.110 --> 01:00:56.829
I can't use a JAK inhibitor because they're already

01:00:56.829 --> 01:00:59.550
on a systemic medicine? Or are you saying there's

01:00:59.550 --> 01:01:01.769
no reason I shouldn't be treating this just like

01:01:01.769 --> 01:01:04.570
I would any other kid with severe alopecia areata?

01:01:04.789 --> 01:01:09.519
Yeah. You know, I would... So here's a case where,

01:01:09.579 --> 01:01:11.780
you know, depending on the age, you, you know,

01:01:11.800 --> 01:01:15.059
you might make a decision about, you know, the

01:01:15.059 --> 01:01:17.260
drug thinking with their eczema in mind, right?

01:01:17.320 --> 01:01:19.559
So we have JAK inhibitors that we didn't talk

01:01:19.559 --> 01:01:22.699
about, but that are approved for atopic dermatitis

01:01:22.699 --> 01:01:25.960
in patients 12 and up, like upadacitinib or Rinvoq

01:01:25.960 --> 01:01:29.300
or abrocitinib, Cibinqo, and Rinvoq is approved

01:01:29.300 --> 01:01:32.440
down to two for juvenile arthritis. And they're,

01:01:32.440 --> 01:01:36.179
you know, A couple of months ago, we saw their

01:01:36.179 --> 01:01:39.320
clinical trial data in alopecia areata suggesting

01:01:39.320 --> 01:01:42.920
it's highly effective. So if the patient is over

01:01:42.920 --> 01:01:47.599
12, a move to upadacitinib or Rinvoq would be

01:01:47.599 --> 01:01:50.360
really appropriate and probably would treat both

01:01:50.360 --> 01:01:52.980
the diseases. Now, have I treated patients with

01:01:52.980 --> 01:01:55.800
both a JAK inhibitor and dupilumab at the same

01:01:55.800 --> 01:01:59.280
time? Yes, but that is, you know. off -label,

01:01:59.420 --> 01:02:01.960
outside the box, can be difficult to get covered.

01:02:02.059 --> 01:02:04.219
And a lot of these patients will, you know, those

01:02:04.219 --> 01:02:06.679
are patients honestly more for very severe eczema

01:02:06.679 --> 01:02:09.219
than alopecia areata, but I have some with alopecia

01:02:09.219 --> 01:02:12.500
areata also. So definitely can think about both,

01:02:12.519 --> 01:02:15.239
but sometimes, you know, just to switch to a

01:02:15.239 --> 01:02:18.420
jack, you can, you know, kind of kill two birds

01:02:18.420 --> 01:02:20.539
with one stone, so to speak. Awesome. Well, as

01:02:20.539 --> 01:02:22.980
we wrap up here, do you have any patient resources

01:02:22.980 --> 01:02:24.900
that you recommend for people who want to get

01:02:24.900 --> 01:02:28.559
more information? National Alopecia Areata Foundation?

01:02:28.920 --> 01:02:31.860
National Alopecia Areata Foundation or NAF is

01:02:31.860 --> 01:02:34.059
a great resource. They have, you know, they have

01:02:34.059 --> 01:02:38.019
webinars, actually, you know, recordings on their

01:02:38.019 --> 01:02:41.300
site. They have, you know, they do advocacy in

01:02:41.300 --> 01:02:45.559
[Washington] D.C. They have a... conference every year lots

01:02:45.559 --> 01:02:48.380
of good medical information and for dermatologists

01:02:48.380 --> 01:02:50.780
listening if you treat alopecia rata they also

01:02:50.780 --> 01:02:54.360
have a quote doctor finder where you can you

01:02:54.360 --> 01:02:56.559
know put your info in there so patients you know

01:02:56.559 --> 01:02:58.699
looking for a doctor who treats alopecia areata

01:02:58.699 --> 01:03:01.219
near them can find you because we find a lot

01:03:01.219 --> 01:03:02.920
of patients are you know have trouble finding

01:03:02.920 --> 01:03:06.440
somebody who has you know knowledge of the disease

01:03:06.440 --> 01:03:08.360
or is comfortable using some of these treatments

01:03:08.360 --> 01:03:12.130
and so that's very helpful I think that community

01:03:12.130 --> 01:03:14.750
of alopecia areata is also very you know active

01:03:14.750 --> 01:03:16.949
in Facebook groups and things like this and i

01:03:16.949 --> 01:03:19.010
think you know those for sure can be a blessing

01:03:19.010 --> 01:03:21.949
and a curse but i think having you know meeting

01:03:21.949 --> 01:03:26.070
people who have a shared experience um can be

01:03:26.070 --> 01:03:28.369
really useful and i think you know for us it's

01:03:28.369 --> 01:03:31.489
very very important to validate you know, the

01:03:31.489 --> 01:03:33.469
experience with our patients. Like this is hard.

01:03:33.570 --> 01:03:37.150
It is uniformly difficult. It's not some failure

01:03:37.150 --> 01:03:39.050
of theirs that they're having a hard time. Like

01:03:39.050 --> 01:03:43.309
it is just an awful disease. And, you know, navigating

01:03:43.309 --> 01:03:46.130
school and all of these things are really complicated.

01:03:46.269 --> 01:03:48.449
And so having, you know, being able to kind of

01:03:48.449 --> 01:03:50.630
phone a friend can be helpful. Even in my clinic,

01:03:50.670 --> 01:03:53.329
we've sort of done a little matchmaking with

01:03:53.329 --> 01:03:55.829
kids who live near each other to have a, you

01:03:55.829 --> 01:04:00.900
know, pen pal or FaceTime pal for sure. Academy [of Dermatology]'s

01:04:00.900 --> 01:04:02.840
Camp Discovery is a place sometimes where these

01:04:02.840 --> 01:04:06.659
kids can meet kids not only with alopecia but

01:04:06.659 --> 01:04:09.519
other you know skin disorders and I think all

01:04:09.519 --> 01:04:11.780
that you know really is valuable but importantly

01:04:11.780 --> 01:04:14.480
this this is a treatable disease now you know

01:04:14.480 --> 01:04:17.219
it really is it's different and so I think the

01:04:17.219 --> 01:04:21.000
support has it's kind of evolving right because

01:04:21.000 --> 01:04:24.750
if you get treatment soon enough you don't really

01:04:24.750 --> 01:04:27.349
probably have to live with it, right? So finding

01:04:27.349 --> 01:04:30.809
resources and all of that is very different from

01:04:30.809 --> 01:04:33.750
before. It was sort of like, how do I cope? And

01:04:33.750 --> 01:04:36.789
I think that's a really welcome change. Well

01:04:36.789 --> 01:04:39.309
said, well said. Well, with that, I'd like to

01:04:39.309 --> 01:04:41.530
thank Dr. Brittany Craiglow for joining us today.

01:04:41.650 --> 01:04:44.070
What an amazing time I've had learning about

01:04:44.070 --> 01:04:46.369
alopecia areata from someone who's obviously an

01:04:46.369 --> 01:04:48.809
expert in her field and a champion for her patients.

01:04:48.989 --> 01:04:57.070
Thank you so much for joining us today. Thanks

01:04:57.070 --> 01:04:59.030
for tuning in to this episode of the Don't Be

01:04:59.030 --> 01:05:01.769
Rash Pediatric Dermatology Podcast. I'm your

01:05:01.769 --> 01:05:04.230
host, Dr. Andrew Krakowski. Don't forget to subscribe

01:05:04.230 --> 01:05:06.469
to our show on your favorite podcast platform

01:05:06.469 --> 01:05:10.230
and check out don'tberash .org for more information.

01:05:10.409 --> 01:05:12.710
A special thank you to our nonprofit sponsor,

01:05:13.010 --> 01:05:15.449
the St. Luke's University Health Network, for

01:05:15.449 --> 01:05:17.849
making this episode possible. Until next time,

01:05:17.869 --> 01:05:20.550
remember, keep calm and don't be rash.
