I've dealt with alopecia since I was 9 years old. This recently FDA-approved drug has given me the fastest results for hair regrowth so far.
- Cara Martin was diagnosed with alopecia when she was 9 years old.
- She has tried many treatments, including corticosteroid injections and home remedies.
This is an as-told-to essay based on a conversation with Cara Martin, 26, a New Jersey resident who has dealt with alopecia since she was 9 years old. The essay has been edited for length and clarity.
I've been dealing with alopecia ever since I was a kid.
When I was 9 years old, sitting in English class, a classmate sitting behind me one day said that I was "balding like an old lady."
At first, I thought, "What are you talking about, that's just where my hair parts."
When I told my mom, we decided to keep track of the area for a couple of weeks. That's when we noticed the bald spot getting bigger.
My mom made a doctor's appointment, and I was diagnosed with alopecia areata, which is when the immune system attacks your hair follicles. Areata refers to a type of alopecia where the balding occurs in patches.
When I first got diagnosed, I honestly didn't know what alopecia was. I didn't even know how to pronounce it for a while. There wasn't much of an emotional reaction, because I never really thought about it at first.
But around age 10 or 11, the alopecia got worse. It didn't take long before I was either bald at the top of my head or the back of my scalp.
As it got more noticeable by my friends, it was almost like I couldn't leave the house unless the entire top of my head was covered. I would wear these three thick headbands to cover up.
There was also always this thought: What are people thinking? Can they see it? What can I do?
I was always stressed out about it and that made it worse, of course. But I at least felt comfortable going outside.
When I turned 17, around the time I was graduating high school, that's when it really started coming out. By 18, I was completely bald.
Unpredictable results
For a long time, there was this back-and-forth of seeing what treatment would work for me.
I've tried so many different things from home remedies, such as taking different vitamins and changing my diet, to regularly scheduled steroid injections to stimulate hair growth.
Early on, I remember my mom putting some ointment on my head twice a day and I would get injections in my head about every 6 weeks.
The ointment was clobetasol, a topical steroid medication, and I would get injected with corticosteroids.
I also tried UV light therapy treatment, where you basically stand inside a tanning box for a while.
Those really worked — until they didn't.
As I got older, I started to go in more for steroid injections because my dermatologist was trying to be really aggressive with it. So I went from injections every four to six weeks to every three to four weeks.
And over time, my hair slowly grew back. By around October 2017, I had a full head of hair with an occasional small patch, but I could always cover it. I still went to the doctor for "maintenance" shots about every six to eight weeks.
But then the hair would fall out. During COVID especially, my hair started falling out again a lot.
The unpredictability was always the thing. I would think, "Oh my gosh, my hair is growing back, and I'm so happy, but is it going to stay?"
It took a really, really long time to be okay with the fact that it probably won't.
Olumiant
Last year, my dermatologist told me about Olumiant — a JAK inhibitor that is used to treat arthritis. It was just coming out and got FDA-approved last June.
She told me, "Look, JAK inhibitors itself are not new but this drug is."
I also heard about about all these scary side effects like strokes, seizures, blood clots, and even death. So I was really scared of all that stuff.
I found this Facebook group called "JAK inhibitors for alopecia," and I just asked a ton of questions on there. I connected with people who had just started to go on Olumiant and those who had been on it for the trials.
After a few months, I decided: Let's just try and see what happens.
My doctor did a blood panel screening to see where all of my baseline levels were, and every two to three months I would get retested just to make sure nothing's gotten out of control.
I thought that if I got any scary side effects, I'd stop. That's that.
I started taking Olumiant in April. It's a small pink pill that I take daily.
My health insurance covers most of the cost, and Olumiant has a program that allows me to pay $5 per refill.
I had the option to get 2 mg or 4 mg, but my doctor immediately put me on 4 mg because a lot of people seemed to not have that much success with a lower dose.
With my alopecia, the hair regrowth timeline always varied because, as a kid, I was just dealing with small patches, whereas later on, I was trying to regrow a full head of hair.
But I would say Olumiant has shown the fastest results that I can recall, especially for my whole head.
I still get the steroid shots every six to eight weeks. When I do get the shots, the doctor will specifically go to the spots that are growing a little bit slower than other areas.
I'm not sure how common it is for people to take Olumiant and get steroid shots but I know my dermatologist said it was safe to do.
So far, I have not felt any of the scary side effects I heard about.
Even though it's only been about seven months since I started taking Olumiant, I would still say the treatment is a success and that it's working.
My dermatologist said that, when I get to a point I feel comfortable, I can reduce the Olumiant dosage to 2 mg as a form of maintenance, although I always have the option to stop completely. There is some belief that if you stop taking the medication altogether that you might have regression.
But having my hair grow back is really nice. It gives me so much confidence.
Before my boyfriend, I would put in the bio of my dating profile something that communicates, "I have alopecia. This is a warning. I might be bald."
When I first started talking to my boyfriend several years ago, I remember him saying that he likes girls with long hair. And I was like, "Oh … I might not have it."
Then when my hair started falling out, I kept saying, "Hey, I understand if this is not okay for you. I get attraction isn't all of it, but I understand."
But he would just say, "No. I love you for you." So it's really nice to be with someone who understands.
I try to tell people, "Hair isn't your identity, but it's a big part of it."