Alopecia World
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Xeljanz (Tofacitinib Citrate): My experience on the trial
I have received a lot of interest from others on here in my involvement with the Xeljanz trials at Yale.
I thought it would be nice for everyone if I documented my progress on here.
Xeljanz is a Jak3 inhibitor and is believed to work with alopecia by turning off the distress signal relayed by the hair follicle to the attacking immune system which is the cause of the hairs falling out. Xeljanz comes in a strength of 5mg per pill and a full box contains 60 tablets. The recommended dosage for arthritis is 1 tablet in the morning and another in the evening each day.
The trial is set in a series of stages and there are requirements before participating. These include monthly visits and blood tests every 2 weeks. Dr Brett King is absolutely fantastic and is an inspiration to me. His positivity and enthusiasm gives me the much needed hope I have craved for over a decade. I have been put on a low dose to start with which is 1 tablet every other day. My dosage has now been increased to 1 tablet every day and next month it could be increased to 2 tablets per day depending on the results.
I have completed my first month and have already noticed my alopecia has stabilised . I have not lost any existing hairs. In addition to this I have seen little hairs growing in my chest area as well as eyebrows. Fingers crossed! To date, I have experienced no side effects.
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AW: Other discussions on Xeljanz / Tofacitinib
https://alopeciaworld.com/main/search/search?q=Tofacitinib
Replies to This Discussion
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Permalink Reply by DJ88 on
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Do you think something like Berberine would close/ or the same effect as xenjalz? Considering they are both Jak3 inhibitor's? I read a post somewhere on here where the person used berberine and it sounded the same with what you just explained. Along with the white regrowth. Was yours also long, soft, and fluffy?
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Permalink Reply by Bekah on
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Thanks so much for your continued updates. As one mentioned, it is great to hear the results from a real person going through treatment. It also helps in the decision to engage in upcoming studies based on the results of your experience. We are all rooting for you and for the drug to be success! Thanks for continuing to share your story!
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Permalink Reply by Crazy Horse on
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All I want is HOPE that in the VERY NEAR FUTURE this nightmare of alopecia universalis will end. That I will have thick, beautiful wild hair I that can wash, shampoo, curl, colour, perm, highlight, brush, and dance with it all the rest of my life in the wind! That I can walk down the street so HAPPY with beautiful, vibrant hair! That it will never fall out again. That I feel normal again and alive again and full of excitement again! Full of possibilities and wonderment again! Bring me the hair! HURRY UP! Get that research going! GIVE US THE DRUG. Let us live again. Hurry up.
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Permalink Reply by Ryan on
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Hope for the unending AU nightmare! I got AU at 27, and am now 35...Wheee!
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Permalink Reply by AlopeciaDestroyedMyLife on
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Update 3:
Not that much to report this month unfortunately other than slightly more vellus on my head and my bottom right eyelash has half grown back.I was really hoping for something a lot more significant by now. I can't help but think a dose increase will drastically speed things up.
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Hey - it's kind of confusing because if Xeljanz supposedly "turns off" the distress signal that kills are hair, why doesn't it just grow back? Why would we need more and more of the medicine ?
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I have now finished my 2nd month on the recommended dosage and things continue to progress.
My eyebrows have a thicker vellus growing with about 10% of them going terminal.
Eyelashes – Many more with about 40% of them going terminal (mostly upper lashes have gone terminal). I think I might have 85% of my eyelashes although not all are fully grown.
I now have 95% of my mustache with strong vellus and maybe 5-10% going terminal.
I have the start of a vellus beard (maybe 25% of it). The hair that started growing on my cheek bones last month have turned to a much stronger vellus (I noticed a couple of them have gone terminal)
The patches of hair below my lower lip have turned to a strong vellus and there has been an increase in growth here as well (one hair is terminal).
My head has seen a real uptick in the amount of vellus growth. This hair is still the soft/ thin vellus. I am interested to see what this area does over the next month.
I have the start of chest hair growth….very, very little at this time.
I have not noticed anything substantial anywhere else on my body.
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Permalink Reply by traci on
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Hi ADML - thanks so much for posting about your treatment! I haven't logged onto Alopecia World in more than a year, but was just prescribed Xeljanz by my dermatologist, and decided to hop back on AW and see if people were talking about it. I've been reading about the study that was done, and went to a derm in the city to see if it was a possibility for me. I've had alopecia since I was 7 and currently have no hair on my head, no eyebrows, and no eyelashes.
I just picked up my Xeljanz prescription today, and I'm a little nervous to start the medication because of the heavy packet of listed side effects that come with it...
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Hi Traci,
That's okay I think it's important for others like me to know about these types of things.
Good luck with the meds , hope it works for you.
I am going to ask to move up to 3 pills a day 15mg and see if that will speed things up.
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Hi Traci, I apologize if this is an inappropriate question, but did your insurance cover the presecription from your dermatologist? My dermatologist also prescribed Xeljanz to me, but my insurance would not cover it. Thanks so much! And, good luck! Heather
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