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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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Sadele, I think I mentioned this to you before, not sure. All new regrowth is thin and spotty. It doesn't get thick for awhile and you will not have full coverage of all your bald spots AT ONCE. So if you keep shaving your head you are going backwards. You are starting from scratch each time. The disease we have impedes the growth of the hair uniformly, even with the Xeljanz. I no longer have any bald spots, but my hair is at different lengths because some areas were more resistant than others. At any rate, Congratulations on your eyelashes and brows finally coming in. You can tell Dr. King from me and many others on the forum around the world: THANK YOU DR. KING!!! Thanks to his insight about autoimmune diseases and his Yale News medical journal article about Kyle Rhodes, in 2014, many of us have our hair back. A year ago I was totally bald without one single hair on my body. But now I'm a walking miracle who will be sporting a cute "do" this summer and wearing mascara thanks to his invaluable research. Wishing you continued success!
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Permalink Reply by Nicolas on
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I do not think it's so, why shaving cause a backwards, to me it's a no sense... here a girl that also shaving her hairs has had all back in 12 weeks (now is not in xelijanz and lost another time all)
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Nicolas do you know this lady on instgram? and does
anybody know her? what have her been with Xelajnz does she stop treatment or still on it !??
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Her History is in istangram, her security did not pay more so she stopped and lost all hairs.
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I think hair grown back on Xeljanz will fall out if drug is discontinued. Hopefully dosage can be reduced to retain hair. The good news is there are more JAK inhibitors on the way and perhaps a topical can be used to keep Alopecia at bay.
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That's Shanna Sultan H and Nicolas. She grew all of her hair back on Xeljanz, then stopped taking it because of insurance reasons and lowering her doseage, then started losing her hair, then shaved it while she was off of Xeljanz for a couple of months. Then started Xeljanz AGAIN. In some of those pictures she is wearing wigs. She was another inspiration to me before I started Xeljanz. Proof that Xeljanz works, but also sadly, what happens if you discontinue.
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Hi Sadele can you ask Dr King if people who are not responding well with xeljanz(jak 1 3)if maybe a Jak 1 2 would do the trick.Or is it just a matter of time and strength.It is so weird how some of us are not responding like the majority.In the last picture you posted a few months back you looked like you were getting regrowth.
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Football do you speak about another medicin like baricitinib?
what about your regrowth now?
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Permalink Reply by sadele on
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I will ask him about other JAK inhibitors. That is something I am also very interested in.
I think about you often!
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I've actually grown more hair since that picture was taken. I can feel and see my lashes... I have missed those terribly.
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Shaving my head has no impact on my growth. It's just a persona choice because having thin long hair doesn't look good on me. Again, personal choice. I prefer buzzing it until I find it acceptable to let it grow beyond the 1/2 inch length.
Dr Kinf is a true pioneer and I will tell him so many people appreciate him.
Here is a picture of my head as of 2 weeks ago: - Attachments:
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image.jpeg, 283 KB
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