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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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Replies to This Discussion
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Permalink Reply by kevin on
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for me even as I have a complete regrowth I hope to do a low dose interleukin 2 treatment to maintain the regrowth that I obtained. the clinical trial must be finished in case of a good result it will be approved for alopecia areata in France.
I myself participated in the clinical trial in March 2017 is injections for 5 days over a period of 3 months with a two-week break. in total 4 courses of 5 days over three months with a break for 2 weeks.
there have been complete, partial regrowth but the hair is maintained long term or I think to remake cures spaced over years. because it is the first time that my hair has remained so long without relapse after stopping treatment
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this is the first try on 5 people.
I participated in the test phase 3 on all the country in France on 5 cities me it was in Paris. the results have not been released yet I think it's coming soon.https://jamanetwork.com/journals/jamadermatology/fullarticle/1876052
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Absolutely fantastic!! So happy for him !! I hope it continues! :)
Best wishes.
Singh.
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Oh my goodness this is wonderful! Is he excited? It’s just so great to see how well he’s responded. And what a good dad he has!
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You look great too Frida! I’m so happy seeing everyone’s results ! Gives abit of hopes to people who are still suffering with this horrible disease.
Kind regards
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Thanks Singh- have you started yet? Hoping to hear of your journey soon.
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Hi Frida,
Will hopefully start this week and if I get good results I will update you.
Thank you,
Kind regards.
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hi frida I increased to 20mg a day it will be 2 months and I do not see any improvement in hair levels. How long did it take to see an improvement when you increased the dose?
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It took about 2 months from memory but I also started pulsing steriods not long after. Is there any more hair coming in? It could just be your body needs a bit more time. I was a relatively recent alopecian - as in I had gone Au only a few months (I got my first patch in December 16, was Au by June/July) before starting xeljanz so maybe your body just needs time to adjust.
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