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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 Sad_Rapunzel on
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At least it's back.. And it's curly, and shakeable :)
You are happy. But. I still can't understand destiny. Why? You supposed to live with this fear forever. Why you? Why we? What kind of lesson is it? Are we so sinful, are we made such a bad things in life? Why this torture? How could I stay religious, believe in God and hope for bet if he does it to me? He doesn't hear me. He put me through this experience for what?... Have you ever question yourself? Also, I hate when people say:"well, now you are struggling, but then you will have something amazing and you will appreciate this experience". whaaa?
I could not imagine what possibly should happen for me to say :"yep, definitely worth it!"
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Permalink Reply by Frida Rupert on
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Mine came back curly too! I’m having to learn how to style it in ways I’d never had to before. But it’s thick and I’m so grateful. Totally understand the anxiety - but I found with myself the longer I had the hair the less anxious I was. When I had a shed I thought I would be terrified but after the first week or so the anxiety left and I had this sense of calm. In my mind I thought- well if it falls I know it can grow back. It won’t all fall out and you know you respond.
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How bad was your alopecia before starting meds and how long had you been diagnosed? Great hair!!!
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Hi guys- so here are some photos from today. I’m not really a photo girl but was going out for an occasion and wanted to see what my outfit looked like. My first vellus hairs were around dec 17/Jan 18 and full regrowth by mid 2018. I had a little shed earlier in 2019 but it grew in as soon as it fell out and there was no loss of thickness or spots. It has come back super curly (dead straight before) a tad thicker and maybe a little lighter. This is a pic of it unstyled, when I straighten it, it’s down to the nape of my neck but it doesn’t hold a straight style for long. I am maintaining at 20mgs, will attempt to reduce to 15 mgs in the next 6 months. Minimal side effects - weight is harder to maintain then before but that could be that my metabolism slowing as I am 36 and have always found my weight easy to maintain before. Mild acne and indigestion in the first few months, those have since resolved and easy to control with a decent face wash. I am very grateful to this site and this forum and all the members who have contributed and encouraged me along the way. For those at the beginning of your journey- with patience and research there is a lot of hope.
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OMG Frida, you are so beautiful!! Happy for you, thanks for being always helpful in this site!
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Thanks Peachfuzz, looking forward to hearing more of your results!
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Thank you!
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Thank you Shad, hope your hair growth is going well!
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Gorgeous! Your makeup is awesome too, love the eyes. Mine is coming back curly too. I hope it looks like this when it gets longer. Your beautiful Frida, inside and out.
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Thats lovely Carlie ❤️. I’m just so happy to be able to wear mascara again- I missed it dearly when I had no lashes.... xx
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