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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 katiegirl on
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I'm not just saying it to say it - but that wig seriously looks amazing! I wish mine looked that good. Unfortunately though, no matter how good it looks we always want back our old hair. I am sure you can't wait for the day to be wig free. I think about you often and have faith that one day you'll be posting a pic of your beautiful short cut! Let us know what dr King says about other jak inhibitors and the availability of them.
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Hi Katiegirls how have you been ?
how's Your hair ?? are you still on 2 pills
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Hi sultan. Yes still two pills. Sometimes I take only one and that seems to be fine. I have been on xeljanz for about 10 months now. No plan to discontinue any time soon
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Don't discontinue Katie
Dr King said Xelajanz is Treatment not cure ! clear
I'm on my 5 weeks and I saw a little 2 white hairs hope hope to continue to all my scalp head and brows. my dr told me wait about 3 months if it not growing probably upping to3 pills
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My Dr said another JAK inhibitor is in phase 3 of trial and about a year away if approved for Alopecia. Doctor thinks we are on the verge of quite a few treatments for autoimmune conditions with JAK breakthrough.
I believe Dr is referring to Baricitinib.
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Also maybe you could ask about topical treatments? My doctor seems to think that they don't work but I'd like to see what dr king thinks about it. Thanks!
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Permalink Reply by sadele on
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Thank you! You are right, though. No matter how good a wig or makeup work or lashes look - it's not what we really want. I MISS my eyebrows and eyelashes and thick frizzy hair... God knows how I miss it...
But I have to make some peace with what I have... Uggg.
I will let you know what Dr King says.
I will update every question and answer I can..
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Hi Sadele can you ask when / how long until this will be an approved treatment for alopecia. What hurdles have to be cleared and a general time line.
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Thank you! Could you also ask if he feels we can use Jak inhabitors long term or atleast use it as a bridge until a cure comes out? And are there any safer Jak inhabitors coming to market soon ? I.e baricitinib ? Thanks Sadele am looking forward to see what Dr King says..
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