Talking to Your Dermatologist About Treatment-Resistant Alopecia Areata

How to Talk to Your Dermatologist About Treatment-Resistant Alopecia Areata

How to Talk to Your Dermatologist About Treatment-Resistant Alopecia Areata
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Treating Alopecia as a Superpower

Founders of the Alopecia Justice League share their mission to educate people about alopecia areata and create a community for those living with the condition.
Treating Alopecia as a Superpower

Alopecia areata is an autoimmune skin disease that causes patchy spots of hair loss on the scalp and other parts of the body.

 It is estimated that around 700,000 Americans currently have some form of alopecia areata.

Treatments vary depending on the severity of the condition, and every individual with the diagnosis responds differently to different techniques. Many patients will regrow hair without treatment. Others experience hair regrowth from options such as topical or injected corticosteroids, oral medications, topical immunotherapy, or Janus kinase (JAK) inhibitors that change the way a person’s immune system responds.

Sometimes alopecia areata doesn’t respond to first-line approaches. When you’ve tried a number of these therapies without noticeable hair regrowth, you might be said to have “treatment-resistant” alopecia areata, says Alexandra Bowles, DO, a board-certified dermatologist at MONA Dermatology in Cincinnati.

“When those treatments don’t work, it doesn’t mean there’s no hope,” she says. “It just means the condition is a bit more stubborn and may require a different approach.”

It may feel discouraging to have to try yet another treatment, but it’s worth making the most of your next dermatology appointment to figure out your best plan of action.

“Treatment-resistant alopecia areata can be incredibly frustrating. But dermatology is advancing quickly in this area, and if something didn’t work in the past that doesn’t mean there isn’t something that will help in the future,” Dr. Bowles says. “Every case of alopecia areata is unique, so it's important to look at the whole picture to create a plan that gives each patient the best possible chance for regrowth and confidence again.”

Here are a few important things to remember before your next doctor's visit so you can be on that path, too.

Prepare a Medication List Before You Go

If you’re seeing a doctor you’ve seen before, your medical records should tell them the treatments you’ve tried in the past. Still, it may be helpful to prepare and bring your own list. Include all the treatments and medications you’ve tried, how long you used them, and the response you noticed, Bowles says. “It gives your dermatologist a clear picture of your treatment history and helps avoid repeating things that didn’t work or caused side effects,” she says.

It’s also helpful to talk about any frustrations you experienced with each treatment. For example, if it was so annoying to use a specific medication that you gave up after a month, when it really needs more time to work, your dermatologist should know that.

“That conversation can help identify how we can get you better or how we can help you make it most useful for your time,” says Arash Mostaghimi, MD, MPH, an associate professor of dermatology at Harvard Medical School and the vice chair of clinical trials and innovation in dermatology at Brigham and Women’s Hospital in Boston.

Note Any Changes in Your Symptoms or Medical History

Sometimes alopecia areata responds to treatment initially and then a certain therapy stops working as well, says Rehan Karim, DO, a board-certified dermatologist with U.S. Dermatology Partners in North Dallas, Texas.

Plan to arrive at your appointment prepared to discuss spots where hair loss is getting worse, or new patches of hair loss. Look out for changes in hair growth on other parts of your body, like your eyebrows, eyelashes, and armpits, he says. These changes could be signs alopecia areata has progressed to alopecia totalis (hair loss on the entire scalp) or alopecia universalis (hair loss on the entire body).

 These types of hair loss may respond better to different treatment options.

Dr. Karim also recommends sharing other recent changes in your life or medical history, such as new stressors, a recent pregnancy, or a diagnosis of another autoimmune disease that could either be contributing to hair loss or change the type of treatment options he might suggest trying next.

State Your Main Concern Clearly

Make sure you and your dermatologist are on the same page by letting them know what matters most to you.

“You might say something like, ‘My biggest concern is the patch on my scalp that’s getting larger,’ or ‘I’m really struggling with how unpredictable the shedding has been,’” Bowles says. “Being specific helps us prioritize what to focus on during the visit, whether that’s regrowth, scalp comfort, or emotional support. The more we understand your experience, your goals, and how this condition impacts your life, the better we can tailor a plan that feels right for you.”

This also helps your dermatologist offer up solutions that are more likely to fit your preferences and lifestyle. For example, if you only wash your hair once a week, a shampoo to use every day isn’t your best bet, but if your dermatologist doesn’t know that, they can’t be as helpful, Dr. Mostaghimi says.

Describe the Impact of Alopecia Areata on Your Daily Life

Your main concern might also be more of an emotional one. “Sharing how alopecia areata affects your confidence, social life, or daily activities gives your dermatologist a better sense of the whole picture,” Bowles says. “It is never just about your hair. It’s about how the condition affects your quality of life.”

Dermatologists are familiar with the emotional toll alopecia areata can take. Mostaghimi says he often finds himself offering reassuring words, such as, “It’s okay to be sad about this; you've gone through something traumatic.” But if your doctor doesn’t bring up the emotional side of alopecia areata, try saying something like: “Can we spend a moment talking about how this is impacting me?” he suggests.

When you make time for this part of the conversation, your dermatologist might also be able to offer resources you may not have known about or considered before, such as support groups or therapy, he adds.

Plus, when your dermatologist is fully aware of how you’re coping, they may be better equipped to advocate on your behalf. “This information can also be helpful for insurance documentation if we need to justify coverage for advanced therapies,” Bowles says.

Ask About Treatments You Haven’t Yet Tried

Your dermatologist knows you’ve probably been searching online for answers. So don’t feel shy about bringing up treatments you’ve heard or read about. “Most patients have already done some research before coming in, and I welcome those questions,” Bowles says. “It opens up a great dialogue about what’s new, what’s evidence-based, and which treatments are the best fit for your particular situation.”

When you are doing your own research, try to stick to reputable sources, such as the National Alopecia Areata Foundation or the American Academy of Dermatology Association. Trends you may have heard about on social media can be a bit misleading, but bringing them up can open up a discussion that ultimately dispels some misconceptions, Karim says.

Ask About Participating in Clinical Trials

If you’ve been scoping out options online, you might have come across the possibility of participation in a clinical trial. Clinical trials are investigational studies that test what happens when people are given a certain medical intervention. Participation in a trial doesn’t guarantee you’ll get to try an experimental therapy (you could be given a placebo), but you’re helping to further the understanding of alopecia areata regardless.

You can always ask your dermatologist about enrolling in a trial, particularly if you haven’t experienced the results you’re looking for from treatment so far, Bowles says. You can search for relevant clinical trials through the National Alopecia Areata Foundation and ClinicalTrials.gov, Mostaghimi says.

Listen Carefully to What Your Doctor Has to Say

This appointment might be an emotional one, which can make it even trickier to remember all the key points your dermatologist covers. Consider taking notes or bringing a trusted loved one with you to the appointment who can help be your eyes and ears.

“It’s also completely okay to pause and ask for clarification; I want my patients to leave feeling informed and supported, not overwhelmed,” Bowles says.

Before the appointment ends, you can also summarize everything you’ve heard to make sure you’re both in agreement, she adds.

Karim will often offer to type what he’s talking about directly into the Notes app on a patient’s phone so they can refer back to the information anytime, and he also lets them know the best way to contact him. “If they have any kind of concerns come up later on, I'm always here for them,” he says.

Make Sure You Understand Next Steps

You should leave this appointment with a clear understanding of what happens next.

“Before you go, take a moment to review the plan out loud with your dermatologist, something like, ‘So we’re starting this medication and following up in six weeks, right?’” Bowles says. Or, “I’m going to get these lab tests, I’m going to read about two treatment options, and then I’m going to send you a message in a week telling you which one I’d like to try,” Mostaghimi says. These types of recaps only take a few moments and ensure you’re aligned, he says.

You can ask for written instructions or an appointment summary, which is often available through online patient portals, Bowles adds.

“I also recommend noting when to expect follow-up results so you’re not left wondering,” she says. “Clear communication makes the process smoother and helps you feel confident about what comes next in your treatment journey.”

The Takeaway

  • Alopecia areata is a type of autoimmune hair loss that results in patchy bald spots on the scalp and other body parts. When it doesn’t respond to first-line treatment, it may be considered “treatment-resistant” alopecia areata.
  • Before you see a dermatologist to talk about alopecia areata that hasn’t responded to treatments in the way you’d like, prepare a list of what you’ve tried and how it affected you.
  • Plan to discuss how you’re feeling about your hair loss, any treatments you’ve learned about and are curious to try, and your main concerns about your hair loss, so you and your dermatologist can set priorities.
  • Consider taking notes during the appointment, bringing a trusted loved one with you for support, and recapping what you heard before you leave, to ensure you didn’t miss key points and you know what to do next.
EDITORIAL SOURCES
Everyday Health follows strict sourcing guidelines to ensure the accuracy of its content, outlined in our editorial policy. We use only trustworthy sources, including peer-reviewed studies, board-certified medical experts, patients with lived experience, and information from top institutions.
Resources
  1. Alopecia Areata. National Alopecia Areata Foundation.
  2. Benigno M et al. A Large Cross-Sectional Survey Study of the Prevalence of Alopecia Areata in the United States. Clinical, Cosmetic and Investigational Dermatology. April 1, 2020.
  3. Available Treatments. National Alopecia Areata Foundation.
  4. Abbott J et al. Alopecia Totalis. StatPearls. February 26, 2024.
  5. Malhotra K et al. An Updated Review on Current Treatment of Alopecia Areata and Newer Therapeutic Options. International Journal of Trichology. April 19, 2023.
  6. Learn About Studies. ClinicalTrials.gov. June 10, 2024.

Oyetewa Asempa, MD, FAAD

Medical Reviewer

Dr. Oyetewa Asempa is an assistant professor of dermatology at Baylor College of Medicine, and the director of the Skin of Color Clinic for Baylor's department of dermatology. She was born and raised in Atlanta and then went on to graduate summa cum laude from Howard University in Washington, DC.

She completed her medical training at University of Illinois at Chicago College of Medicine, during which time she also completed a year of research at the National Institutes of Health. She completed her internship at George Washington University, and then her residency training at the Harvard dermatology program, where she served as chief resident in her final year.

She specializes in hair loss and scalp disorders, as well as pigmentary disorders in patients of color. She has spoken at multiple national conferences. Outside of medicine, she enjoys writing short stories, as well as writing and performing spoken word poetry.

Sarah Klein

Author

Sarah Klein is a Boston-based health journalist with more than 15 years experience in lifestyle media. She has held staff positions at Livestrong, Health, Prevention, and Huffington Post. She is a graduate of the Arthur L. Carter Journalism Institute at New York University, and a National Academy of Sports Medicine–certified personal trainer. She moderated a panel on accessibility in fitness at SXSW in 2022, completed the National Press Foundation’s 2020 Vaccine Boot Camp, and attended Mayo Clinic’s Journalist Residency in 2019.