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American alopecia ninja attacks awareness


American Ninja Warrior competitor Kevin Bull is helping to boost awareness about alopecia areata, while researchers are beginning to tap the potential of JAK inhibitors for this indication.

American Ninja Warrior Kevin Bull can outrun, out-jump or out-climb most of his competitors, but there's no escaping alopecia.

For those unfamiliar with the NBC show American Ninja Warrior, Bull and his ninja bros (plus several female competitors) race through increasingly gnarly obstacles to snag a $1 million grand prize. Last year, he finished fifth.

The show also gives Bull a platform to raise awareness about alopecia, from which he has suffered for several years. "I was 21 when my hair started to fall out." Soon after, a doctor diagnosed him with alopecia universalis. "All patches of hair on my body are mostly gone."

Like most patients, Bull was surprised and worried about changes in his appearance. "It was very disconcerting, particularly when I found out there was no good treatment for it."

Dr. GoldbergLynne J. Goldberg, M.D., says that alopecia areata (AA; ICD-10 code L63) creates huge psychosocial issues. She is professor of dermatology and pathology, and laboratory medicine, at Boston University School of Medicine and director of the Hair Clinic at Boston Medical Center. Individual counseling can help patients come to grips with their illness, she says (for additional support tools, please see sidebar).

Some people lose all their hair quickly, Dr. Goldberg says, "And they have no idea what's going on." Even under treatment, she says, every patient's prognosis is different. "They don't know if they're going to have one or two patches, or lose all their hair. It's devastating when you look in the mirror and don't recognize yourself. It changes your life completely."

When people encounter someone with patchy or total hair loss, Bull says, they often assume it's a result of chemotherapy or another dire medical issue. "That's not the case with alopecia – other than the hair loss, we're totally healthy."

But bull noticed that strangers began to treat him differently, in subtle ways. "It seemed that people were a little more standoffish." Due to a temporary loss of self-confidence, "I was a little less approachable than I'd been before."

To overcome this hurdle, "I became more proactive about engaging people with body language and eye contact. My response to the physical change I went through helped bring me out of my shell." He considers this evolution the disease's biggest lesson, and says he would not trade his journey for anything.

An uphill climb

AA will afflict an estimated 1.5% to 2% of Americans during their lifetime, Dr. Goldberg says. Alopecia universalis afflicts around 1% of those with AA.

"These patients are very hard to treat." Most are under age 30 when the condition strikes, Dr. Goldberg says. Newly diagnosed patients and those who have progressed to alopecia totalis (loss of all head hair) may lash out at their doctor. "They're angry and upset, and it's hard not to take these things personally when you're trying to help someone."

In patient histories, she recommends asking when the symptoms emerged and if the patient has a family history of AA or other autoimmune disorders such as hypothyroidism, which are often associated with AA.

When examining patients, she says, check the scalp, eyebrows, facial hair and, if needed, body hair. "Is the patch solitary, or are there multiple bald patches? Look for signs of disease activity: short, stubbly hairs or 'exclamation mark' hairs (short, broken hairs that are wider at the top than the base)."

Because younger children don't tolerate injections well, Dr. Goldberg says, they require topical treatments such as steroids or minoxidil. For older children with a solitary patch, "Sometimes we offer injectable steroids. Placing the steroid under the skin can be very effective."

For widespread hair loss, she often uses topical clobetasol under occlusion.

"If that doesn't work, I'll try contact sensitization therapy. You make the patient allergic to a topical compound, chosen because it's a potent allergen." This involves applying a sensitizer such as diphencyprone weekly. Once the patient is allergic, she says, "Painting a dilute concentration of the compound over the entire scalp provokes an inflammatory response that interferes with the inflammatory process that causes AA." Studies report varying success rates for this strategy,1,2 she says, though it works better for patchy than widespread AA.

If contact sensitization fails, "The patient and I must decide if we want to pursue systemic therapy." Effective systemic treatments – including steroids, methotrexate and cyclosporine – exist, Dr. Goldberg says. But she avoids them due to concerns for side effects. Additionally, "There is a high recurrence rate when you stop therapy."

NEXT: JAK inhibitors show promise


JAK attack?

Janus-activated kinase (JAK) inhibitors represent another option that shows tremendous promise, Dr. Goldberg says.

"I see very good results with them. The problem is that currently, the side effect profile remains unknown. They seem to be well-tolerated, but people have only been using them for a year or two in alopecia."

Dr. ChristianoAngela M. Christiano, Ph.D., says that in the clinical research she is aware of at different clinical sites using JAK inhibitors for AA, "Side effects thus far have been few and far between." She is professor of dermatology and genetics at Columbia University College of Physicians & Surgeons. "The most important things to look for are drops in platelet counts or hemoglobin, as well as rare cases of herpes reactivation and elevated blood pressure," she adds.

Based on mouse studies performed at Columbia, and the fact that JAK inhibitors have performed well topically in psoriasis studies, Dr. Christiano says, "There is a strong rationale for trying them topically and orally in alopecia. Most dermatologists would probably prefer to have both forms – an oral that patients can start on a high dose for a short time, before transitioning to a lower dose or topical preparation for longer-term treatment."

Aclaris, Concert, Incyte and Leo Pharma have all begun developing oral and/or topical JAK inhibitors for AA.  "Several independent clinical researchers have also begun reporting their experiences using the two FDA-approved JAK inhibitors, tofacitinib and ruxolitinib," Dr. Christiano says. The clinical research team at Columbia under the direction of dermatologist Julian Mackay-Wiggan, M.D., M.S., has recently completed an open-label 12-patient trial of oral ruxolitinib in moderate to severe AA, and is nearly finished with a similar trial using tofacitinib.

In the Columbia clinical trials, Dr. Christiano says, "We've been working to help develop biomarkers and tools so that when patients request JAK inhibitor treatment, we will someday be able to offer stratifying gene expression tests to predict which patients would have the best chance of responding, so that nobody goes on them unnecessarily with a poor chance of response."

Through gene expression biomarker testing done at baseline and eight or 12 weeks into treatment, "We see a profound reduction in inflammatory gene expression signatures in response to treatment. Likewise, we see an increase in hair follicle gene expression, which is usually very low at baseline."

Regarding dosing, "The general consensus from dermatologists using tofacitinib seems to be that the approved (arthritis) dose of 5 mg twice daily is probably insufficient for most patients with AA. Taking 10 mg twice daily is more likely to produce a good response," as was the case in a recent study of long-term tofacitinib for psoriasis.3 "Usually, patients are treated for several months to get full regrowth. Some people are going out to a year."

So far, says Dr. Christiano, "There's a lot of enthusiasm. Many patients that have used JAK inhibitors for AA have had some clinical benefit, though most have relapsed to some degree after stopping treatment. The question is getting insurance to pay for them."

Because insurers do not cover this off-label indication, many patients are using a manufacturer's coupon for a three-month trial of tofacitinib, and more recently for ruxolitinib. Once they show clinical improvement, their physicians are using clinical data and photographs to lobby for coverage of their treatment.

Disclosures: Dr. Goldberg reports no relevant financial interests. Dr. Christiano has been a consultant for Aclaris Therapeutics, Inc.


1. Aghaei S. Topical immunotherapy of severe alopecia areata with diphenylcyclopropenone (DPCP): experience in an Iranian population. BMC Dermatol. 2005;5:6.

2. Bulock KGCardia JPPavco PALevis WR. Diphencyprone treatment of alopecia areata: postulated mechanism of action and prospects for therapeutic synergy with RNA interference. J Investig Dermatol Symp Proc. 2015;17(2):16-8.

3. Papp KAKrueger JGFeldman SR, et al. Tofacitinib, an oral Janus kinase inhibitor, for the treatment of chronic plaque psoriasis: Long-term efficacy and safety results from 2 randomized phase-III studies and 1 open-label long-term extension study. J Am Acad Dermatol. 2016;74(5):841-50.

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