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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 Xeljanzmiracle on
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Thanks Katiegirl. Yesterday was my first doctor's visit since starting Xeljanz on July 28th. The doctor's at UCSF were THRILLED to see my short, spiky blonde regrowth mixed in with some dark terminal hairs. They took pictures and told me I am their FIRST CASE OF AU BEING REVERSED by Xeljanz. They said they might want me to attend Grand Rounds or an Alopecia Conference to educate other students(Its UCSF, a medical university) and other doctor's about Xeljanz. I told them that I would love it if I could be used to give other individuals with AU hope.
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Permalink Reply by katiegirl on
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Great news xeljanzmiracle! Congratulations on the eyelashes I'm still impatiently waiting for mine lol
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We are definitely in the "Mutual Support & Envy Club, lol! You're waiting for eyelashes and I would forego them to have that full head of hair you have after 5 months. Did your hair first come in white & wispy like mine is doing?
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Permalink Reply by Jckah on
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update: Monday is going to mark 11 weeks and the growth has been insane the past 3 weeks. I feel great, and I've started coming out to my family and friends about the treatment.
I've started posting about it on Instagram and I sat my boyfriend of over a year down and explained everything to him. I was in tears because I was afraid he was going to be mad that I kept this from him, but he held my hand while I talked for about an hour, and when I stood up to give him a hug he grabbed my butt and said "this changes nothing", I found a keeper :)
I feel like a new person, even if I have to come off the xeljanz eventually and my hair falls out again, this has given me an outlet to open up and be honest. I feel ready for anything at this point. But really, all I want is my damn eye lashes and a pixie cut! :p - Attachments:
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image.jpeg, 273 KB
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That's wonderful! Your picture is amazing! I just saw my first eyelash yesterday.
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Jckah - this was a really great post! I was smiling as I was reading it! Very happy for you and I'm happy also that you have decided to tell your boyfriend. He sounds like a really great guy. You will have your pixie cut soon enough can't wait to see your pictures :)
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Did your hair first come in white (blonde) and wispy like mine is doing?
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Hi there - I had maybe 1-2% hair growth for the past 11+ years and also have RA. My doctor gladly switched me over to Xeljanz to see if it would help both. I've been on 15mg per day for about 7 months now and have seen great growth that all started with the blond wisps. I am close(ish) to a pixie cut, but need some additional growth in the front. Saw my Dr yesterday and asked if I thought it had plateaued but I don't think it has. Will try the Rogain - great idea! I had given up on all treatment until now and am feeling optimistic again. I can't stop touching it! Oh and I have had some growth with eyebrows. In fact, if nothing else happens and I can keep the brow growth, I'll be happy. There is a mascara like make-up I use to highlight the growth and it is so satisfying seeing actual hair vs just the line I used to put on every day. Hang in there and thanks to every for sharing!
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