Heather Woolery-Lloyd, MD

What types of resources are available to our vitiligo patients?

 Until recently, we didn’t have great resources. If you just Google Vitiligo Foundation, you will find resources like the Global Vitiligo Foundation, the vitiligo support group, the National Vitiligo Foundation. Ruxolitinib has really come out with some good educational material on their website. The American Academy and Dermatology for Patients has great information on vitiligo as well as many other dermatologic conditions.

Social media can sometimes be helpful. You can find other people with vitiligo to connect with. You have to be careful because there is a lot of misinformation out there, but if you are feeling alone, it is a way to find other people who are living with vitiligo, too.

This was such a wonderful evening. I’m so happy I got to meet you, Tarasha, and spend the evening talking about your journey with vitiligo. Thank you for your bravery and for being so open and honest about how vitiligo affected your life and your journey. We are very grateful for you participating in this evening. And thank you, Dr Lain, for all of your insightful, brilliant advice and information about vitiligo. There is so much to learn. I am really excited about the research that is coming up soon.

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Ted Lain, MD, reviews available support groups, vitiligo education, and other resources for patients with the disease.

Resources for Patients With Vitiligo

This is one question that I am dying to ask you because I want to be a better doctor. What advice would you give doctors who are treating patients with vitiligo?

 Don’t do what my dermatologist did and give minimal information. If it is something that you know about, give all of the information to a patient that you possibly can. Don’t minimalize it. Tell them the risk from good to bad, from high to low, and everything in between. Don’t skim over anything. Don’t make them ask you questions about what you’ve told them versus them asking you questions about what they want to know.

:Have you accessed any resources for vitiligo?

 I haven’t looked into any resources for vitiligo. The university in my city has a study, but I don’t know if I want to be a part of it. There is information about it on the internet, but I know there is more to understand about it than what you read online. If you don’t have anyone to actually explain things to you, it’s harder.

: What we need to do as dermatologists is really listen to our vitiligo questions, spend time making sure every single question is answered. It is a confusing disease. We need to listen and educate without minimizing it. You didn’t know that you were going to depigment so quickly.

 In June, I took pictures of my legs and they had little splotches here and there. By December, my legs had no pigment. My melanin was completely gone. It slowly affected my body, and my face was the last thing it reached.

When it gets warm, though, my face is the first thing to repigment. Maybe that is a study that could be done. If it’s your last place to depigment, is it going to be the first place to repigment when the weather does get better?

Tarasha, a patient with vitiligo, shares her story to help aid dermatologists and other physicians who treat people with the disease, and highlights the importance of transparent communication.

Advice for Physicians Treating Patients With Vitiligo

Tarasha, I want to talk to you about your journey. How did your friends and family react and support you when you got this diagnosis?

 It was a shock to a lot of people. Recently I went to one of my sorority’s events, and I hadn’t seen one of my friends in 3 or 4 years. And she asked, “What happened?” That’s the common question…not “What’s going on?” but “What happened?”

And I said, “I have vitiligo, and I was diagnosed in 2020.”

And she’s like, “Oh, that’s what happened.”

I mentioned earlier that I went to homecoming. Nobody recognized me. Nobody knew who I was. People that I spent time with and people that I hung around, nobody recognized me. It does take a toll on you. Every day is a mental struggle for me with vitiligo. I can sit and I can laugh at some jokes. But there are some days I don’t want to hear a joke about it. I don’t want you to joke about my skin. I don’t want you to pick fun at it. There are some days I just want to crawl underneath the blanket and dream about what my skin used to be. It is a journey, and it is one that I’m going to have to continuously go on. Imagine being 44 years old and your skin changes.

Your condition was so rapidly progressing, you didn’t have any time to even catch up. Your feelings didn’t have any time to catch up with your skin. That’s what’s so challenging. I can tell that you have a great attitude, and I love that you are trying to move forward with this. I can see how overwhelming this diagnosis is. One thing I want to tell you is that it’s OK to feel upset. It’s OK to feel angry. You’re probably a little bit angry; a little bit “Why did this happen to me?” And I always say to my patients, it’s OK because this is how you look and even though we try not to focus on the outside, it really does affect many aspects of your life.

 It took a toll. My mental health didn’t have time enough to catch up with my physical. And my mental is still trying to catch up with my physical, because my physical is constantly changing. So, if it’s a new piece of pigment that pops up and then it’s gone the next day, I missed that little piece of pigment. But it does take a toll on you; you have to prepare. If I had anything to say to anyone, especially someone in my age range, it’s find a psychiatrist or psychologist because you’re going to need them. You’re going to need them, and I didn’t do that. You can’t walk this journey with just a dermatologist. You are going need a team of people, doctors, family, friends that are going to help you. It’s going to be a constant mental struggle for you, and if you don’t wrap yourself around that, it can break you.

: I wanted to talk a little bit about seeking help, because this is not easy. It is a struggle, and there are so many support systems that are available that can help you through this journey. You were talking about your friends who ask, “What happened?” instead of, “How are you?”—that feels like a stab to your heart. When someone is newly diagnosed, how can people be supportive?

 For friends and family, just be there and listen. I’ve had several mental breakdowns with it. They have gotten easier. In the beginning it was really hard. I went through depression with it, and the one thing I would say is just be a supporter of your person. If they tell you that they don’t want to joke about it, don’t make a joke about it. Follow their lead; don’t just go off on your own agenda, saying whatever you want to say. Follow that person’s lead because you never know what day of the week could be the day that they just don’t want to deal with vitiligo, even though they have to. They don’t want to be reminded of it.

When I was diagnosed, I had just received a promotion at my job, so I had to go back on campus when everything started opening, I had to go back to my job. I had to show my face to people. The scariest part is reintroducing myself to people, to society. Having a great support system of people is the best thing anyone could possibly do. If you find a psychiatrist or a psychologist who deals with disorders, I think those would be the best doctors to go speak with because although it’s a skin condition, it’s also a disorder at the same time for the patient. Find somebody to speak with who deals with a disorder because they might have more insight on ways for you to combat some of the mental things that are going on vs just someone who is just going to sit there and listen to what you have to say.

I am very fortunate that I work in a university setting. So, there are specialists within specialists within specialists. If you’re fortunate enough to live in an environment in a city where there is a large university hospital, they are usually psychiatrists or therapists who specialize in skin conditions. There is a dermatologist who specializes in the impact of how skin conditions affect our mental health. If you have lived a very unique experience, it would be helpful if someone who was taking care of you knew about that condition.

Heather Woolery-Lloyd, MD, and Tarasha comment on the impact of vitiligo on a patient’s quality of life and the importance of support for patients with vitiligo.

Importance of Support for Patients With Vitiligo

Topical ruxolitinib cream is FDA-approved for nonsegmental vitiligo. How does the product work?

It is a topical JAK [Janus kinase] inhibitor. JAK inhibitors are intracellular small molecule medications. They work inside the cell to block the effects of interferon on the keratinocyte or on the melanocyte. By blocking the effects of the JAK, which is attached to the receptor on which the interferon binds, you can block the downstream effects, which stops the phosphorylation of the JAK, stops stack phosphorylation, and, therefore, blocks any kind of transcription of and the production of inflammatory cytokines. It binds to the JAK enzyme, which, at its core, stops the production of inflammatory cytokines and, therefore, destruction of the melanocytes is halted.

It works inside of the cell and stops that signal to produce all of those inflammatory cytokines that are driving this disease. Based on the clinical trial findings, and in your experience and practice, how does the repigmentation with ruxolitinib cream compare to other treatments for vitiligo?

 There are no head-to-head trials yet. In fact, there are very few trials for vitiligo since nothing is FDA-approved. We look at week 24 in terms of the primary efficacy outcome for the ruxolitinib trials against the 6-month end point. That compares very favorably to anything else we do where you only see results 3 to 6 months after you have initiated the therapy.

: Patience is key when it comes to vitiligo because it takes so long to repigment. If you are already using ruxolitinib in your practice, how do you choose the right patient? Do you do monotherapy or combination therapy? How do you approach a patient when you decide topical ruxolitinib is a good treatment option?

 First, we look inside the patches of vitiligo and make sure that there are dark hairs there. Because if there is pure leukotrichia, which means only white hair, there is no target for the ruxolitinib. If the stem cells aren’t there, you are not going to get the pigmentation that you need. So, focusing on the hair in those hair-bearing areas is important. The other thing to think about is the difference in response across the body. Areas with a higher density in hair follicles have a higher target for that treatment to work on and will repigment faster. So, the face will repigment faster, for example, than the wrists, knees, or elbows.

You also have to think about areas of trauma, such as the hands, elbows, and knees. Unfortunately, trauma plays a part in vitiligo, so you also need to educate your patient in terms of where they have the vitiligo and how different areas may repigment at different rates.

In terms of my treatment options, I tend to prescribe polytherapy. I do not use monotherapy, as we do in the trials, because I want things to get better quickly, and I have different options. I use a lot of narrow-band [ultraviolet B phototherapy] and excimer with my vitiligo patients. Now with the ruxolitinib, I will combine those 2. I might cycle on and off, either systemically pulse methylprednisolone, for example or pulse strong steroids, depending on where it is on the body. It depends on the patient and the location of the vitiligo.

Topical ruxolitinib is approved for up to 10% body surface area. What do you do in those patients who have more than 10% of their body surface area affected?

 I can prescribe the ruxolitinib for those areas that are more cosmetically appropriate, where I want to try my very best to get the pigment to come back. So, the face, the neck, the décolleté area, and the hands. I can use topical calcineurin inhibitors, topical corticosteroids, or narrow-band phototherapy elsewhere. If it’s a lot of body surface area involved, I may try a systemic JAK inhibitor because none of those are available for atopic dermatitis. Many of them are in trials right now for vitiligo. And I feel comfortable with them based on my experience with A&D [acquisition and development] and based on my experience with clinical trials.

I do the same thing in my practice. I focus on the areas that the patient’s most concerned about that we are most likely to get the best response, like the face, for example. I practice in a very sunny climate, so repigmentation is a little bit easier.

Heather Woolery-Lloyd, MD, and Ted Lain, MD, discuss the mechanism of action and efficacy of ruxolitinib cream in the treatment of vitiligo.

Heather Woolery-Lloyd, MD

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