I hope i'm not misleading in the title, I believe it was tofacitinib. It could have been ruxolitinib. But a JAK inhibitor is a JAK inhibitor.
Anyway I've posted a few times about this. I was enrolled in a double blind study a year ago for about 6 months (placebo group, low dose group, high dose group). To this day I'm not sure which group I was in, although I grew some vellus hairs so I suspect it was one of the real medicine groups.
In January, I rolled into the Open Label study, where everyone got the high dose. I was so pumped because my dermatologist said some of the folks in the blind study were growing a lot of hair. "Growing hair like crazy" is I think how she described it.
Well, this week I finished my 6 month course on a twice daily regimen of topical JAK inhibitor. I would estimate my SALT score has gone from 55% loss to over 75% loss.
Now let me be clear: I don't think the drug made my AA worse. I think it just didn't do anything. I grew some vellus hairs in patches on my bald areas, but that's about it. No pigment, nothing exciting. The fact that my AA got significantly worse over the course of the treatment confirms in my mind that the drug is either ineffective OR topical treatment is just not being absorbed down to where it needs to be.
I shaved my head at the start of the year and I'm glad I did. Looking at just how much more hair I've lost confirms the decision, there's no way I could have hidden this much loss.
I so wish I had better news for you all. I asked my doctor what the response rate was to the trial from her participants. I offered "somewhere around one-third?" and she said yeah about that. I should have let her throw out the number.
But even if the response rate is 1/3, that isn't great news in my mind and makes this treatment just as INeffective as most of the other things on the market (none of which worked for me). We'll see the official results when the study closes. The good news is there was no side effect. The solution is a little viscous (thick) which I didn't like at all, took a half hour to go from wet to leaving my head tacky to the touch. Glad to have a dry head :)
Happy to answer any questions?
Interestingly, Aclaris just announced results from their ATI-502 study. I was in this one as well, before rolling into the Open Label. This previous study was the double blind one, so I don't know if I had medicine or not.
The placebo group outperformed both the low dose and high dose medicine. Essentially confirming that their topical JAK inhibitor is ineffective.
I'm pretty convinced at this point you have to be taking oral to have any chance at a change.
Thank you for keeping us posted.I did buy the jak cream from Philadelphia for several months and it didn’t work.It was in a more of a cream base so your hair didn’t get so greasy was hoping your greasier method was the answer.
We tried a JAK cream from Philly for my daughter's eyelashes and eyebrows. No growth on the brow, but the eyelashes grew in very quickly. She continued to use the cream, but the lashes fell out.
I have different information about the topical ATI-502. In the picture you can see eyebrow regrowth after 12-month treatment.