Hey, welcome to the Lichen Sclerosus Podcast. My name is Kathy, and this is our journal of learning about and living with lichen sclerosus. Today, I’m so excited to introduce the new frontier for the Lichen Sclerosus Support Network. I have a very special guest and a very special surprise for you. So without further ado, let’s get into it. Welcome, Dr. Foster. I’m so excited to be here with you. I am gonna let you introduce yourself, and then we’ll get into our surprise.

My name is Dr. Erin Foster. I’m an associate professor of dermatology and obstetrics and gynecology at Oregon Health & Science University in Portland, Oregon. I’m a mucosal specialist. I see patients who have diseases of the mouth, esophagus, the vulva, the genitals, and the vagina. I’m excited to be here, and also, to serve on the medical advisory board of the LSSN.

Love it. So Dr. Foster has been with us for years, and we have been focused on lichen sclerosus, but we’re so excited to announce that we are moving into our lichen planus era. If you are on our email list, you have recently gotten a lichen planus survey, and you’re probably like, “What is this?” Now you hear it, we are moving into lichen planus, and Dr. Foster is going to be the head of our LP department. We’re so excited to have her on and learn from her.

We decided to do this because lichenoid conditions have some similarities, but they also have some drastic differences. A small portion of our lichen sclerosus community also has some form of lichen planus, and they don’t have a home. We’re gonna be that home, and we’re so excited to partner with Dr. Foster and her team to start educating our lichen planus community and growing it. So excited!

Me too. Yay! I mean, really, this is a really important resource. Patients are going to be so happy that this is happening.

Thank you. So for our LS community that is listening, can you walk us through what is lichen planus, and then what makes it different from LS?

Thanks for asking. Lichen planus is an autoimmune disease of the skin, which is similar to lichen sclerosus. It even has similar immune cells that are involved, T cells. But the difference with lichen planus is that it can affect many more sites. People can have lichen planus of any mucosal site in their body or their skin. So mucosa would be like their mouths, inside their esophagus. It can affect their voice box, up their nose, in their ears, in their eyes, and then can affect their vagina as well as their vulva, or can affect the penis.

It is a very painful disease when it’s inflamed, but it also can cause really severe scarring in these areas. So patients who have oral lichen planus often have trouble opening their mouth really widely. If they have it in their esophagus, they might have trouble swallowing, they might choke. Or if they have it in their vagina, they might have actually scarring so that a speculum couldn’t fit in or so that somebody can’t have penetrative sex. That is a little bit of overlap with lichen sclerosus because that can happen, but that’s primarily on the skin surface, not on the mucosal surface.

Wow. And then with LP, you can also have it in your scalp, right?

Yeah. On your skin and on your scalp. LPP of the scalp is lichen planopilaris. Pilaris means hair. LP of the skin, there’s lots of different kinds. Lichen planus of the scalp can be really traumatizing because it is a scarring hair loss. And so when people have inflammation of their scalp, it’s usually in the front or right on the center of their head, and they’ll have a burning feeling. They’ll have sometimes a scaly rash, and then they lose their hair, but then the hair follicles scar down so they can’t make new hair. And so, once people have lost their hair for lichen planopilaris, it doesn’t grow back.

Wow. Okay.

So it’s really important to recognize and treat it early, because you can reverse the inflammation, but you can’t reverse the scarring from this disease.

And so if someone has LS and they’re wondering, “Do I also have LP, or can I also have LP?” Specifically on the vulva and the vagina area, how does it look different from LS?

This is a question that is actually very much not known. You can even have a biopsy of tissue from the vulva that comes back as lichen sclerosus, but a clinician would say, “Gosh, I really thought that was lichen planus.” So right now, the difference that most of us are using who are vulvar specialists is that if it involves the vagina, then that’s lichen planus. If it’s on the surface of the skin—the dry skin, the keratinized skin—or just at the base of the vagina, at the perineum, that’s more likely to be lichen sclerosus.

I would say, even as someone who’s actively researching this, I used to think I could tell just by looking, and I’ve had now numerous patients where they’ve come to me, I diagnose them with lichen sclerosus, treated them, their skin got better, but then something happened so that their vagina became inflamed and then I thought, “Oh my gosh, do you also have lichen planus or did you have lichen planus all along?”

I think the other thing that is more common is to have mouth sores, and the location of the mouth sores really matters. So if they’re on the sides of the tongue, inside the cheeks, or if the gums are really inflamed, bleeding, tender, or if the tip of the tongue feels like it’s burning on hot coffee more often than it should, then those are all symptoms of lichen planus.

I’ve always thought—and this is something that I heard a while ago, and obviously may not be true anymore—but if it was white skin, it was LS. If it was red, then it was LP. Are those lines blurred now?

That’s how I was taught, and I only graduated residency in 2020. Now what we’re realizing is that hyperkeratotic LP, lichen planus, can be white. And so if you have it around the vulva, it can be white and look just like LS. Most of the time we think of it as erosive, so it’s red. There’s a section where the top layer of the skin is peeled off, and there’s like a white lacy border to it. That’s more classically what vulvovaginal lichen planus looks like. But I have lots of photos of patients where they had what everyone thought was lichen sclerosus, even showed it on the biopsy, and then didn’t respond to lichen sclerosus treatments or biopsies later, and it was found to be lichen planus.

So talking about treatments, great segue. How does LP treatment differ from LS treatment?

Are you kidding me? Oh my God. I don’t want to scare people, because I take ibuprofen all the time!

Don’t we all? For patients when they come in and they have either a prescription level ibuprofen or they’re taking a lot of Aleve, I have to say that this could be making it worse. I don’t know. I’ve had a few patients where they’ve just stopped cold turkey and their lichen planus has gone away. More commonly, the medicine sets off kind of this immune reaction, and stopping the medicine isn’t the cure. It can help it, but it’s not the cure. But these are medicines that are really commonly prescribed, so diabetes medicines like metformin, blood pressure medicines like metoprolol, beta blockers, ibuprofen, Advil, Motrin. It’s crazy.

And so with that being said, is there enough research that on the labels of these drugs, is lichen planus listed as a possible side effect?

No, definitely not. And even in the dermatology teaching, the study books say you can’t get mucosal lichen planus from these medicines, but me and my colleagues all know differently. We’ve seen this happen. Topicals are first line, but second line there’s a medicine called hydroxychloroquine that treats lupus and other autoimmune diseases. That’s my next line.

Is this a systemic pill?

It’s a pill. Safe to take during pregnancy, but that takes about three months to start working. And then after that medicine, methotrexate, which is a weekly T-cell immune modulator. And then after that are the new medications, JAK inhibitors. I prescribe a lot of those. I haven’t found those to be as effective as methotrexate, but they do have fewer side effects. All of these have terrifying lists of possible side effects, but most of my patients, as long as we get the dosing right and as long as they really need the medicine, most people do really well.

And so with the dosing, is this something like it’s a little bit experimental?

There are no FDA-approved medications for lichen planus, because nobody has pursued that. It is crazy, so it’s all off-label. But what we do is we read the literature, study our patients, and talk to each other. There was just a lovely study that Medical College of Wisconsin did about acitretin versus methotrexate for lichen sclerosus. If you need a systemic, which one’s better? Turns out methotrexate is better. The same thing is happening now for lichen planus. People are sharing case series trying to figure out which treatments fit best. Each medicine takes about three to six months to kick in, so a lot of the process is simply being present with the patient while they are going through this really hard time.

And I think that’s also why we decided to partner and create the space for lichen planus patients because right now there is no home for them. Just like we created a home for lichen sclerosus patients, if we create that home for lichen planus patients, and then we bring those voices together and say, “Listen, we need research. We need treatments. We need a clear diagnosis strategy. We need doctors to be properly trained in this because there is this huge group of people that are being underserved.” We can do that, right?

Yeah. It’s considered a rare disease, and I really don’t consider it that. Same with lichen sclerosus. It seems like we have seen more numbers since COVID, and people have flares with stress, but also with vaccinations sometimes.

Just like LS.

Just like LS. And so it feels like this is untapped, and that’s why I’m so excited because I have a lot of LP patients who are LSSN followers because you guys talk about a lot more than just the disease. You talk about how to live, sex, topicals, the pain, sex therapy, and pelvic floor PT. It just makes sense.

Yes. I’m so excited to go into this new frontier with you, and really, I’m excited to sit here and have another conversation with you in four or five years and see how we have changed the landscape. I had a conversation with Dr. Krapf, and it was like a four-year check-in. She said the difference is like night and day from what her patients were coming in with four years ago to where they are coming in today. And I’m excited to have that conversation with you in four years with lichen planus patients.

Oh, I just got goosebumps!

Me too! Because we are. We’re going to change the landscape. We’re going to get more eyes on this. We’re going to give people a home where they can congregate, because community is so important.

Yeah, and that gives people the tools to then go back to their clinicians and doctors and say, “Hey, you should know this. You should read this. You should be listening to these experts.”

Not only that, on the mental side, when you have hope, your body responds and it’s easier to heal. Loss of hope is like you just deteriorate. So we’re all about hope here. We’re so excited. If you are listening and you have lichen planus, just know we are here with you. Join our email list at lssupportnetwork.org/subscribe because we’re gonna have so many resources coming for you.

In September, we have an LP summit. It’s gonna be a three-day, Friday through Sunday summit where we are gonna deep dive with the experts into LP. So just know that we are going hard for you, just like we went hard for LS, and we’re gonna continue to go hard for our LS community as well. So don’t think we forgot about you. We’re just adding some new brothers and sisters into the mix. I’m so excited.

Me too. It’s long overdue. I’m so glad this is happening.

So thank you so much. I cannot wait. I know we’re gonna have some more interviews to deep dive into specifics. If you have LP or you have questions about LP, definitely send it to support@lssupportnetwork.org. Let us know what do you wanna learn about, what questions do you have, what resources do you need, so that we can create them. We need to know what is going on with you guys. So thank you, Dr. Foster. Thank you. This was an amazing conversation, and I’m so excited.

Me too! Thank you.