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Clinical Trial Blog Part 2: Topical JAK Inhibitor
All,
I am excited. As you may have seen from my clinical trial blog, I was a patient in an Acclaris study of a topical JAK inhibitor on alopecia areata.
My trial has ended, and the results were disappointing (don't worry I marked "Extremely Disappointed" in the medicine on my questionnaire!). My AA got worse over the 6 months - certainly not BECAUSE of the drug, but just the drug didn't slow or reverse the progression. My dermatologist believes I was in the "low dose" group (three groups in this double-blind: placebo, low dose - 12% medication, and high dose - 46% medication). I grew some white fuzz but that's it.
BUT! Now I move into the Open Label study. This is a study where everyone gets the high dose. My dermatologist told me that I WILL grow hair within 2 months like the rest of her patients. I cannot imagine a world in which I have a full head of hair. It's like being told aliens will land on earth two months from now. My entire life has told me this won't happen. But honestly I am encouraged as the results have come before me.
The bad news is, he told me that he had a patient much like me who regrew all of his hair, then needed to stop taking the medicine for two months. He started shedding again. So this is definitely shaping up to be a lifelong medicine. At least it's topical and not oral - so fewer side effects, if any.
Evidently Pfizer is conducting an almost identical study and is a bit ahead of Acclaris, so perhaps this will get FDA approval sooner rather than later. I am just hopeful it hits the market soon. Before that happens, loyal readers, I am here to get experimented on to make sure it works safe and sound! I'll be on the drug for 6 months as part of this study. I am already stressing about regrowing all my hair, then 6 months the study ends and it all falling back out! Ha. Keep checking back for regular updates, I'll even take some pictures! (Taking some good "before" shots as we speak).
Be careful what you put into your body everyone, I don't trust these mail order drugs from India. Not worth getting cancer when we're so close...
Replies to This Discussion
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Permalink Reply by JenniferMoran on
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Hey - surprised there are no replies to this. How is the open label trial going?
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Permalink Reply by 5DH on
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So, it went badly. The drug appears to be completely ineffective in the topical solution that was developed. My AA has gotten worse. I don't think the drug made it worse, I think it just didn't slow or reverse the progression.
The drug company (Acclaris) announced that the double blind trial, which preceded the open label study, had really poor results, with the placebo group outperforming the group actually getting the drug. Oof. Can't think of a worse outcome. They ended up halting the Open Label study when the double blind results came in, which I believe means they're calling it quits.
I was one of the few who actually completed the entire 6 month open label regimen, however, and still had nothing to show for it. I had some regrowth only in the form of vellus hair (peach fuzz) that never became terminal hairs with pigment.
I'm obviously not very close to the research, but it seems like the only JAK inhibitor that can affect AA is oral. I'm not sure if anyone has a promising topical in the pipeline anymore. Frankly, that's too bad as obviously topical has few, if any, side effects (I had no side effects at all).
As for me? I shaved my head about 8 months ago and haven't looked back :) Even if the FDA approved an oral JAK inhibitor, I don't think I'd even try it. Not worth the possible side effects.
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I tried the xeljanz cream from the Philadelphia pharmacy acouple years ago for about 5 months didn’t work.I think I read somewhere the cream doesn’t penetrate the scalp deep enough.Yet if you look at the studies with rats it worked great.Bummer I think the cream was one of the drugs they wanted to approve next year.Thanks for keeping us all posted.
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Hi, I read in a recent research paper that the tofanicitib in liposomal base was far more effective than the cream. Is that what you also used?
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The study I was in wasn't a cream. It was a clear, liquid solution - like eyedrops but slightly more viscous. Took about 20 minutes to dry and was still slightly tacky to the touch for a while afterwards.
I agree with Football fan. This trial mixed the drug with a topical solution. I think they need to take a step back, and first develop a base solution capable of penetrating the skin to the layer at which the immune system is attacking the follicle. THEN it's easy to mix a drug into that.
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I've been using a product called Biohair X from a clinic called Elite Hair Institute. It's a liquid solution with a consistency similar to mineral oil, and contains xeljanz, bimatoprost and melatonin. what I've noticed with it is that new outbreaks respond quickly to it, but areas that were bald for longer have taken much longer to come around. We've been using it for 12 months now, and one of the oldest most stubborn patches is just now starting to see good terminal hair growth.
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I'm glad to hear that's working for you.
My dermatologist oversaw 6 patients on this open label study. During the double blind phase, one of them grew back a ton of hair, and on the washout period it started falling out again. Then when the open label started, he great all his hair back again.
Placebo effect? Or is he unique somehow? Who knows. I'm not convinced there is any topical solution out there that works effectively for enough people, but if you find something that works for you that's great news.
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