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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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Well hopefully something will work somewhere, lol!
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Permalink Reply by aus on
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Hi
Is there any chance you could pass on the specialist's name and clinic as I too live in Australia and have had no luck in any doctor wanting to help.
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Permalink Reply by thanmikron on
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Hi! I had AU when I was 8 and it reappeared as AA now at my 35, due to extreme stress. After trying cortisone for half a year, I decided to try topical Ruxolitinib 0.6% twice per day. It's been already almost a month but no hair has grown yet but I'll make sure I keep you guys posted re the progress. I'm still hesitant getting Ruxolitinib or X orally or even have cortizone simultneously with topical R. A lot to lose in terms of side effects and some of them might not be obvious now but be more like long-term.
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thanmikron,
Does the Topical irritate your skin at all? Do you leave it on your scalp all day, or do you have to wash it off after awhile? Thank you for sharing and best of luck!
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Beth just like any cream. You can wash it after a while. It doesn't irritate the skin.
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You are right thanmikron, it is wise not to overtax your immune system and to proceed cautiously. Everyone responds differently. I'm glad we are finally getting some topical users on here so we can gage their response in due time. I'm sure that most of us would like to switch to topical usage instead of oral to lessen the possibility of long term systemic side effects. We also want to see if Topical R works better than Topical X, especially since it is over 4 times the price per tube! Who prescribed the Topical R for you? Did you buy it from that compounding pharmacy in Philadelphia?
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Xeljanzmiracle, didnt have to get it prescribed. I was told that no insurance could cover it since it has not been approved for AA. Bought it from Greece. I spent almost 4k euros and hope it lasts for 2 months. Next time i will also check in Turkey. Unfortunately I was not aware of X since yesterday, when I spent 10+ hours to go throught every single message in this blog :) we'll be in touch!
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Where do you live Thanmikron?
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I used to live in London and had to leave my job and life in London and now I live in Athens, Greece
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Do you know if Topical R is available in Turkey?
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