Excited that I was selected to participate in this trial (https://clinicaltrials.gov/ct2/show/NCT03354637). Thought I'd share my journey blog-style since there was no NDA included in anything I signed or was told. I'm a guy in the 26-35 age range. Just in case I'm going to be vague about some details and am going to post on a different timeline than the one I'm actually on (e.g., I'll be posting about week 2 when really I'm on week 4, etc).
The topical solution is a clear serum. I use a dropper to suck 1-2mL out of a large bottle and rub it into my scalp twice per day. It's thicker than water and more viscous than I'd expect. Like a VERY thin mucus. Leaves almost an oily residue on my scalp and remaining hair which isn't pleasant, and after a few minutes becomes tacky to the touch. It fully "dries" in about 1.5-2 hours in that it loses a lot of its tackiness but still makes my scalp feel kind of greasy to the touch. Almost wish it was a normal cream, but I suppose this is necessary to ensure the drug can get through the skin and to the hair follicle.
The drug is a JAK inhibitor, I'm not sure which brand. There are three options/strengths and neither I nor my dermatologist know which one I've been assigned: Placebo (no drug), Low Dose (~0.12%), and High Dose (~0.47%). Some of the other participants at my location started in the spring and my dermatologist indicated that they suspect one person has a placebo because she is not showing any results, but the other patients are showing improvement. We didn't get into specifics of what "improvement" means. The pessimist in me thinks I'll be on the placebo for sure, but I can hope.
In this post I'll talk about the first two visits. Visit #1 was screening, Visit #2 I was given the drug for the first time and shown how to apply it. During Visit #2, I was chatting with the doctor. I asked him about the trial so far. He said Aclaris has had to expand the inclusion criteria twice because they've had so much difficulty recruiting people. He seemed to think that this drug is < 2 years away from hitting the market, which is really cool. The doctor's office staff seems to think this stuff really works based on the others in the trial.
My thoughts from my first weeks is:
I have to say I'm a little anxious. My SALT score was ~50% hair loss. That almost knocked me over to hear, as I gave up on dermatologists 5 years ago after having every kind of treatment imaginable and none of it working. Staring at my scalp every day I never would have thought I had lost half of my hair. Kind of like slowly gaining weight over time and then one day someone shows you that you're 70 pounds heavier than you were in college. I've had AA for 12 years now, and this is the worst it's ever been. I would say my "normal" loss historically is in the 25-35% loss range. Over the years, I've grown my hair longer in areas above my patches, and use hairspray to let that hair cover the spots and hold it in place. I know this "curtain" of hair has been getting thinner on one side to the point that you can see through to my scalp. Since May I have been applying eye shadow to my skin to keep the pale white skin from showing through. I wish they made foundation in jet black; eye shadow is not ideal to cover such a large area. I've been getting more and more desperate as hair fell out. Had I not qualified for this drug trial, I think I'd have shaved my hair off. The "map of the world" look terrifies me to think about. I think I could make it work if I picked up and moved, but walking into work and seeing the same people I've seen for years with a sudden change? The looks, the comments, I don't think I can do it.
Of course now that I am in the trial, I'm not sure how my intricate hair styling technique will fare, as I've never had to "style" my hair during the first days on the medication thanks to vacation I already had planned in an area where I can wear a hat. Will the tacky residue work with the eye shadow (heck maybe it'll make it apply thicker)? The serum ends up getting into my hair a bit and making it wet/greasy. I'm really worried that I won't be able to be on the trial AND continue my styling. But to come this close and still have to shave my head... I have to figure out a way to make it work.
Lot of anxiety. Lot of details I need to figure out. The doctor said that if I am on the non-placebo and if the real drug works for me, it will be ~8 weeks from the first treatment before I see any regrowth based on his other patients in the trial. I still run my hand through hair that's still there and see some fall out, same thing in the shower. So the shedding hasn't slowed. Maybe that means I'm on the placebo, maybe it means that the drug takes more than just a few days to start working. I'm not reading into it.
More to come!