Advances in Managing Alopecia Areata with Dr. Amy Kassouf

John Horton:

Hey there, and welcome to another Health Essentials podcast. I'm John Horton, your host. Sometimes your body has a way of going off script, and alopecia areata is one of those moments. The autoimmune condition can cause hair to just fall out in patches. It often happens without warning, too, which can be unsettling for anyone dealing with a flare-up. Thankfully, treatment advances have made managing alopecia areata easier.

We're going to talk through some of those options today with dermatologist Amy Kassouf. She's one of the many experts at Cleveland Clinic who visit our weekly podcast to help us better understand our bodies. So with that, let's learn about the tools available to deal with alopecia areata and why they offer so much hope.

Dr. Kassouf, thanks again for stopping by to chat. It's always a good day when you are on the guest list.

Dr. Amy Kassouf:

Well, it's very nice to be here. Thank you, John.

John Horton:

Well, before we get into our topic, I want to talk a little about you and your approach to dermatology. I've heard you talk about the psychological aspect of skin and hair conditions, and that even though, I mean, some of these may not be life-threatening issues, they affect how you live. Can you explain that thought in more detail and how it guides you?

Dr. Amy Kassouf:

We've talked before about how big our skin is and what an impact it has on our life. And I think it has a lot to do with how we present ourself, how confident we feel, how distracted we feel. If you have a pimple on your face and all you can think about is that pimple, how are you going to appropriately do whatever your job says that you need to do, or study or learn what you're supposed to learn?

So I think there's a lot of distraction issues. I think there's a lot of self-confidence issues. I think aside from the sort of pain and itch and other symptoms that the skin can bring forth, you don't have to die from a disease to be severely impacted from it.

John Horton:

And I know you mentioned skin and then hair too. I mean, I think we've all had those bad hair days where you're going someplace, whatever, and you never feel comfortable for the entire day because you just feel like something's off. I may be having one of those today, to be honest.

Dr. Amy Kassouf:

I've had lots of them. But yes, you're right. You don't quite feel put together. You don't feel like you can move forward and present your best self and think about what you're doing, rather than what everybody's looking at when you're presenting. So especially these Zoom days, I think it's gotten even worse since maybe the last time we talked, since we've had a pandemic and everybody's on the internet and everybody can zoom in on you and lots of issues with the skin.

John Horton:

Well, the skin and the hair, and that leads us right into our main topic today, which is alopecia areata. And that is obviously a different level of having a bad hair day because I mean, it's literally you're losing hair. So let's talk about that a little bit and let's just start with what alopecia areata is because it's not the basic hair loss we think about, like the receding that comes with age. This is an immune system issue, correct?

Dr. Amy Kassouf:

Correct. This is an autoimmune disease where your immune system attacks your hair follicle. And there's some theories about why that happens, and it can happen at any age. So you can brush through your hair or your child's hair or somebody else's hair and all of a sudden find a bald spot. And that's a panicky situation. And you don't know how fast it's going to progress, if it's going to progress, what you have to do about it, what you did to start that process happening. So it's very, very emotional.

John Horton:

Now, when you say spots, what size spots are we talking about? Are these big spots? Are they on the smaller side? How noticeable can they be?

Dr. Amy Kassouf:

So they can be as little as a fingertip or as big as a half dollar. And the problem is they can spread and they can become as much as your whole head or your whole body and your head. It can include eyebrow hairs and eyelashes, which are big functional issues. It's very, very scary to find that first little spot, no matter how big it is.

John Horton:

So I mean when it spreads, obviously it's not a contagious thing, but is it just that your immune system just, it goes a little haywire and it's just kind of a cascading effect?

Dr. Amy Kassouf:

Yep. It recognizes a protein in your hair follicle that it thinks is foreign and it needs to attack it. And sometimes that's just a little local area and we treat it and it goes away and fills back in and it's no big deal. And sometimes it just goes crazy and it goes after every hair on your whole body.

John Horton:

Now, are there certain people who are more prone to this? Does it hit certain groups a little bit more?

Dr. Amy Kassouf:

It seems to be that people who get autoimmune diseases or have autoimmune diseases in their family are more prone to this. It comes in groups. Once somebody comes in with alopecia areata or similar autoimmune diseases, sometimes we go ahead and look for other autoimmune diseases happening.

John Horton:

And it sounds like there's no rhyme or reason to when you might get a flare up. You could be rolling along, no problems, no problems, no problems, and then boom, one day all of a sudden you have one of these patches pop up.

Dr. Amy Kassouf:

So I'm going to say that it's something that is very hard to quantify. Stress is probably a big issue implied on this, but it's so hard to know which stress, when stress, how do you control stress? I can't treat the stress. But most people do notice their first flare or their flares after that with a stressful event.

John Horton:

I mean, that makes sense because I know we've talked on this podcast countless times about just the detrimental effects that stress has on your body. And I think we all feel it. We're all so used to having stress in our day, but you don't often just take a moment to think about what it's actually doing to your whole system. And it sounds like alopecia areata starting up could be just kind of a byproduct of that stress that builds up.

Dr. Amy Kassouf:

And I don't want anybody to think that stress is the only cause of it. I think you have to be a little predisposed to it first and then the stress sets it off.

John Horton:

It could be a trigger.

Dr. Amy Kassouf:

It can be a trigger. That's a good word.

John Horton:

It kind of opens up the floodgates and lets it go. And as we know, the body is a mystery and there's still so much we're trying to figure out. And it seems like this is one of those cases.

Dr. Amy Kassouf:

And every time we figure out one thing, it opens up 10 more questions. So it's fascinating.

John Horton:

Yeah. Now we have figured out a lot, and I know that was something you were really excited to talk about. And that's when we look at treatment options. A few years ago, things were very limited, but now we've seen some advances. So walk us through what some of those are and what they mean for folks.

Dr. Amy Kassouf:

So not everybody goes straight to the big guns. So if you notice you have a little patch or when you need to get diagnosed in the beginning, there's lots of simple things to start with. And then depending on the progression and how you respond to the treatment, then we can start to move forward. But we don't have to do some of the things that used to have lots of side effects.

So we still start with a topical steroid or a topical calcineurin inhibitor, some of the eczema creams, and a lot of small injections of cortisone. So if you just have one little quarter size spot somewhere hidden in your scalp, that's still the best way to treat it. But if it seems like it's progressing rapidly, if it seems like this is going to be a real impact on your life, we have a whole new class of medicines called JAK inhibitors.

John Horton:

Well, walk us through what those are, because I'm guessing a lot of people haven't heard about them, don't know how they work. What's the process on that?

Dr. Amy Kassouf:

So the JAK inhibitors are pills. They don't have to be injections.

John Horton:

That's a plus.

Dr. Amy Kassouf:

A plus for a lot of people, for sure. And they can modulate how aggressive the immune system is. And so there's several different ones. They started off actually to treat arthritis. And as we've looked at the mechanism of that action, it turns out that it can modulate this attack on the hair follicle by the immune system.

John Horton:

So basically it sounds like this pill that you take, it prevents your immune system from looking at these proteins in your hair as being enemies and just turns their attention to the things they really should be paying attention to.

Dr. Amy Kassouf:

Exactly. So when we take a biopsy, when we look at the skin under the microscope where there's alopecia areata, we notice lots and lots of immune cells around the hair follicle. And we call that a swarm of bees pattern where all these immune systems, these immune cells are clustering around the hair follicle. And what the JAK inhibitor does is basically tell them, no, no, you turn off and you go away.

John Horton:

Go away. Shoo, shoo, get out of here.

Dr. Amy Kassouf:

Exactly. Exactly.

John Horton:

That's really fascinating. You don't think about that happening, like you have these cells all ganging up on a hair and making it fall out.

Dr. Amy Kassouf:

Right. So the hair follicle is still there, but the swarm of immune cells, these bee-like immune cells that are around the hair follicle, just make it so that it's swollen and it can't hold that hair anymore. But if we make them go away, it can grow a brand new hair. So it doesn't damage, it doesn't scar the hair follicle. If we turn it off, it allows them to grow again, which I think is amazing.

John Horton:

If people are taking JAK inhibitors, is that something that you take all the time if you're kind of prone to alopecia areata? Is it something that you just take in the moment when you start seeing symptoms?

Dr. Amy Kassouf:

You control it. We don't cure it. So if you need that level of treatment for your alopecia areata, you're probably going to be on it for life, at least at this point. There may be a time where there are some interesting new therapies that may cure some autoimmune conditions. So at least you'll be taking it until something new and better comes along.

John Horton:

So I think that's a key thing there. So basically the JAK inhibitors are kind of a block that prevents it from happening, but they're not curing whatever the autoimmune condition is that's causing it. They're just slowing it or silencing it for the moment.

Dr. Amy Kassouf:

Yeah. It can rev right back up again if the stop is removed. Yep.

John Horton:

So obviously that's something that it sounds like people go to if they're having pretty serious problems, it's pretty regular, it's really affecting their life. What are some other, just those base medical treatments that are available to address alopecia areata?

Dr. Amy Kassouf:

So we've touched a little bit on topical steroids and injectable steroids, where we actually just put a little teeny injection of that cortisone right around the base of that hair follicle and turn it off locally so that you don't get a whole systemic reaction to that steroid. Because we know steroids over long periods of time and high doses, which we used to have to use when we didn't have JAK inhibitors, have lots of side effects. They can thin your bones and cause blood pressure issues and diabetes issues. So it's nice to have an alternative, but local treatment with that is not such a big deal.

John Horton:

And that's something that sounds like people will come in, like if you have a little patch that all of a sudden pops up. I take it you make an appointment, you come in right away, and you get those injections and it kind of stops it in its tracks.

Dr. Amy Kassouf:

Yep. You do it once a month until they grow back, which usually is a few months. Sometimes a little longer. Sometimes we chase them for a while and then they turn off.

John Horton:

I saw some other things that might be used. Minoxidil, which I know everyone kind of associates with hair growth. Is that something that's used frequently for alopecia areata?

Dr. Amy Kassouf:

So that's interesting. So I think minoxidil is a general fertilizer for the hair. I think it just helps the hairs grow. They stay in growth phase longer. We've used it topically for decades now for the regular pattern hair loss that happens as we get older, if we have the hair loss gene or whatever. But it seems to be a nice adjunct to any treatment that we're using for JAK inhibitor, or for alopecia areata as well, including the JAK inhibitors.

John Horton:

We just did a whole podcast looking at hair growth stuff too. And honest to God, it could have been a gardening podcast. That's why I laughed when you said fertilizer because it seems like that is what it is.

Dr. Amy Kassouf:

Yep. It just pulls in the good nutrients and helps those hairs grow, no matter what kind of hair loss you have. So it's not just for alopecia areata. That's a good one.

John Horton:

And then other methods I saw, phototherapy and PRP. Are those useful tools when it comes to managing alopecia areata?

Dr. Amy Kassouf:

So phototherapy I think is interesting. I don't use it as much as I used to. It is immunomodulatory, so it does have the ability to turn off that overactive immune system. But when the hairs start to grow back, they start to block the light. So there's a limited use with that. I don't do that very much anymore.

John Horton:

Okay. And then PRP, is that-

Dr. Amy Kassouf:

The PRP I think is interesting as well. You have to draw blood, you spin it down, you take this special area of the blood that has all these growth factors in it, and you inject it back into the skin. And I think it is helpful, especially for people who don't do well with cortisone injections and that kind of thing. The studies were sort of 50/50, and they're expensive and you have to draw blood and go through this whole procedure. I think there is a place for it, just like there is a place for red light therapy. But I think it's not as defined as some of the other therapies are.

John Horton:

Dr. Kassouf, I loved how with each one of these things you started with the, "That's very interesting," because it does seem like when you're trying to deal with alopecia areata and manage it and do whatever, it seems like there might be some trial and error involved. And you have all these different tools and you see which one works best for certain individuals.

Dr. Amy Kassouf:

I think there's a lot of that, but I also love the idea that we have some solid science behind some good new medicines that I can say, "This is what's going to happen with this medicine." So I like having a little bit of both.

John Horton:

It kind of lets you play a little hair detective going on here. You've got to crack the case and figure out how you can best fix it.

Dr. Amy Kassouf:

And how do we fix it and minimize side effects? So maybe we use a big gun to fix it, but we can't use as much as we want, so then we use some of these other things to minimize some of the other side effects.

John Horton:

Yeah. Now, what about natural treatments? Because I know a lot of folks like to lean toward those sort of things, and there's no shortage of great ideas available if you go looking online. Are any of these worth trying?

Dr. Amy Kassouf:

To some degree, a lot of those have been used by the time people get to me, and they have or have not worked. You also have to be careful that alopecia areata can sometimes just stop on its own and the hairs can grow back. And you don't know what to attribute that regrowth to if you're using something maybe that hasn't been studied as well as other things.

John Horton:

Yeah. So when people talk about using essential oils or aromatherapy, I've even seen going to the kitchen and pulling out honey and onions, garlic, oatmeal, all this sort of stuff, sounds like you shouldn't put a lot of stock in that, that it's going to magically solve everything.

Dr. Amy Kassouf:

I think that's a good way to look at it. There have been some instances where we've used allergens. We talked about even poison ivy, now don't do this, but certain allergens that are completely natural and you put them on the skin. And there was a thought for a long time that if you created an allergic reaction to something and put it on the skin, the immune system would get distracted by that allergen and stop attacking the hair follicle. And there is some truth to that. There's some studies that do that. There's a couple different antigens that they've looked at. But now you've got a bad rash instead of the alopecia areata.

John Horton:

Well, it sounds like you're creating another problem to deal with another, and that's usually not a great way to go about doing things.

Dr. Amy Kassouf:

It's hard to control that one. Yes.

John Horton:

And then I think you had mentioned stress, and so I want to make sure we touch on that too. Have you found that if some people are dealing with alopecia areata, that I guess working some mindfulness into their day, some stress relief might help just diminish the condition and minimize those appearances?

Dr. Amy Kassouf:

I feel like it also helps our treatments work better. So there's something about stress that you've got the accelerator and then the brake on at the same time. You can slow the car, but it makes it harder if you're doing both at the same time. So if you can use some stress mitigating techniques, yoga, box breathing, some of the things you mentioned, I think they're helpful.

John Horton:

Those are always great self-care strategies. If people are looking at other things they can do in that same realm to help manage alopecia areata, what other things might come up? I mean, are there dietary things you might be able to do, for instance?

Dr. Amy Kassouf:

So hair is pretty finicky. So it needs a really good amount of protein and mineral to grow. So I think you have to be cognizant of your nutrition. And so if you're eating high quality proteins, if you're eating fruits and vegetables that contain lots of vitamins and minerals, I think you're nourishing that hair. Again, we're back to the fertilizer theory, but in a little different way. The minoxidil helps bring the blood in, it carries all these nutrients in. If you're stressed and you're not eating, if you're losing weight, if you are not giving it the nutrition that it needs, it's harder for that hair to grow back.

John Horton:

It's amazing how so many things in the body are linked. And I don't think a lot of us look at our hair as something that has to do with all these other things, but it is affected. And whatever you're eating, whatever you're feeling, it will eventually, it sounds like, trickle up to the locks on your head.

Dr. Amy Kassouf:

Yeah, because they're kind of the last in line. Everything else needs to be fed first. Your heart needs to be fed first. Your brain needs to be really fed first. And so our hair becomes non-essential if there's a limited supply of nutrients.

John Horton:

Yeah. It's kind of the canary in the coal mine, it seems like. If you have a problem, it might pop up in your hair first because your body's going to protect everything else. Make that a priority.

Dr. Amy Kassouf:

That's a different kind of hair loss, but absolutely. Yeah.

John Horton:

All right. At the beginning of this chat, we talked a little bit about the emotional aspect of hair loss. Do you have tips or suggestions for folks struggling with how they feel with alopecia areata?

Dr. Amy Kassouf:

A lot of people have told me people look at them like they're sick. They get it confused with chemotherapy issues. They get it confused with infectious disease issues. And so they get treated differently, and not necessarily in a good way. We already said this is not contagious, but to the person standing next to you in line at the grocery store who backs up a step, they don't know that this is not contagious or non-infectious kind of thing.

And so that's through the years, and there's other diseases that this happens with too, but I think that makes you feel differently about yourself. You're not going to say hello to that person or help them with their groceries if they've just stepped away from you. So we interact differently when our appearance puts a barrier between us and other people.

John Horton:

So what do you advise people I guess to do in those situations? How do you cope with that? How do you handle it?

Dr. Amy Kassouf:

So there's lots of cool hairpieces or lots of things that we can do to make it not look like it does. Men probably have it a little easier than women because if you just shave your hair, as my brother says, "Bald is a style," whereas the patchiness is probably not. But there are definitely medical grade hairstylists that can make pieces or add pieces, or there's cool wraps and ways of diverting the eye from it so that you can feel a little better about it. And I use it for all the types of hair loss, not just alopecia areata.

John Horton:

And I'd imagine there's also the styling you can do. If the patches are small enough, you might be able to comb over it or do something like that, but it takes a little bit of work and you just have to deal with it as it comes.

Dr. Amy Kassouf:

Yeah, there's that. The bigger issues come with loss of eyebrows and eyelashes because there can be functional issues with that. You get more stuff in your eyes and more irritation. And some people who've had this longstanding, now this goes back even before the JAK inhibitors, but would have their eyebrows tattooed on so that they didn't look too blank.

John Horton:

Does the hair eventually grow back or is that kind of sometimes it does, sometimes it doesn't?

Dr. Amy Kassouf:

Mostly it does, but there are instances where it doesn't.

John Horton:

Okay. And I think there's a process there. I mean, that's not an overnight thing where it just comes back. I mean, you're looking at weeks.

Dr. Amy Kassouf:

A year.

John Horton:

Wow, that long.

Dr. Amy Kassouf:

You may see some fuzz in a few weeks to a few months, but to get actionable, stylable hair, if it's coming in a centimeter a month, that's going to take a long time.

John Horton:

Wow. Well, and you could see where that would be, it would be very difficult, and you could see where the emotional aspect of that, how it would put a big strain.

Dr. Amy Kassouf:

There's a lot of coping. Yep.

John Horton:

All right. Well, Dr. Kassouf, one last question for you, and then we'll let you get on with your day. What's the most important message you would want to deliver to someone who's newly diagnosed with alopecia areata and just wondering where they go from here?

Dr. Amy Kassouf:

We're excited about it. We can start to control this reaction. And it's not going to be easy, but it's doable. So mostly I find when I have to deal with things that are tough, if we have a plan, then it's easier to deal with and easier to cope with.

And we have a plan for how to turn off that immune reaction. We have a plan for how to make your skin and hair more functional and less obvious in the meantime. And you're not alone. It's something that we have a lot of people working on, and new things are coming. So it's exciting every day.

John Horton:

It sounds like there's a lot of reason for hope. And even though it's got to be a little crushing when it happens, if you work with your care team, you work with your dermatologist, it sounds like there are answers out there that can really help you manage the condition and keep those flare-ups at a minimum.

Dr. Amy Kassouf:

And the websites are good, where there's some groups with patients who are at all stages of this and who've been through some of the studies and who know all the coping mechanisms and who's the best hairstylist for this kind of disease. And there's a community. So I think you have to create a community to take care of it.

John Horton:

Well, like I said, I think you have given us a lot of reason for hope with just everything that you laid out here today. And a word you kept using throughout was interesting. And I have to tell you, this has been a very interesting conversation because it's amazing the advances that we've made and just how much is going on with hair that I don't even think we're always thinking about, but it sounds like we can take care of the issues that come with alopecia areata.

Dr. Amy Kassouf:

We're at a point where things are taking off. So it is interesting, as I say.

John Horton:

All right. Well, that is a good way to end. I always like ending on a high note and a little bit of optimism. So thank you again for coming in. And we always just love these chats with you.

Dr. Amy Kassouf:

Thank you, John. I appreciate it.

John Horton:

If you have alopecia areata, know that there are ways to manage both the physical symptoms and the emotional side of the condition. Talk with your healthcare provider to find the approach that makes the most sense for you. If you liked what you heard today, please hit the subscribe button and leave a comment to share your thoughts. Until next time, be well.

Speaker 3:

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