Alopecia World
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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 Rascalx2 on
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Damn bro you look good! I have those spots all over, i cant pull off that shaved tight look... sitting where i am , id be happy with just that one spot.. you got a full head of hair! So happy for you
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Permalink Reply by kevin on
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hello rascal if you like the shaved style and you have patches i did myself in turkey hastambul pigmentation tattoo I paid 1200 euro hotel included for the complete head,
it's a beautiful city
their clinics is new better than in France I assure you in France he asked me 4200 euro.
if you like the newjack haircut it's perfect if you have hair over your head
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Permalink Reply by Sad_Rapunzel on
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I think I need to do that, because my side are so thinned it's disgusting to put fingers in my hair. i will never have a boyfriend again, it's really disgusting feeling even for myself - those thin hairs....
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soooo coool!
you're really looking like a very healthy man! norwegian, i'd say :)
very handsome
i wish i had this kind of thickness hair...
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Thank you, I'm Greek. Give it a shot try ito new hair style!
Thanks everyone I was freaking out cutting my hair... Glad I did it .
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It does look great. I honestly think, unless you pointed out specific spots, it would be impossible to see them. So glad you are feeling a bit better. I do think tofa will stop flares from going too far, but may not stop incident of increased shedding and minor spots popping up during and after trigger incidents.
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Frida you look fantastic! So happy for you!
It's been a long difficult road and you deserve every minute of joy this brings you.
My life is better for knowing you, and so is everyone else's here that's interacted with you. Every so often in life we run into a very special person, so thanks for being around.
I would say, stay kind and beautiful, but I don't think you have a choice in either :)
xo
TC
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Aww, thanks TC- that’s lovely. Thank you too for coming on here and being so encouraging to everyone. Sometimes we need that positivity as usually this alopecia business is the roughest it gets! Keep growing hair and soon AA will be a thing of the past!
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I finally met with the man himself who made this all possible for many us, Dr. Bret King at Yale.
I thought I'd share some of what I learned from our meeting.
We discussed Xeljanz/Tofacitinib response rates he's observed in his studies and his clinic patients;
1/3 of patients respond to 10mg (5mg BID[=twice/day])
2/3 of patients respond to 20mg (10mg BID)
He starts off his patients at 10mg BID for 3 months, if no response he increases to 20mg (10mg BID) for 3 months. He doesn't feel it's worth wasting the time to try 15mg for 3 months first to determine if you're a responder or not. Just reduce/taper later, regrow first.
The 2/3 response rate increases to about 3/4 when 20mg Xeljanz is combined with 5mg oral minoxidil (2.5mg BID).
He seems to be a good man, and a good doctor that truly cares about his patients. He understands how devastating this illness can be, unlike other doctors with the "it's just hair" attitude.
Somewhat expensive to see and a 6 month waiting list may not make him an ideal choice, but all in all a good learning experience, if anything.
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Hi TC, how did he prescribe the oral minoxidil? 5mg a day?
Thanks for the information!
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Hi carol,
He prescribed 10mg pills to halve or quarter. Mainly because he said they cost less. He said you can take 5mg once per day or quarter the 10mg pills to 2.5mg BID if you prefer.
I think it 's better to take 2.5mg BID since the half life of oral minox is 4hrs and I presume less impact in lowering your BP (assuming it's usually normal) than with a single 5mg dose, but that's just my opinion. He didn't seem to think it matters.
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TC,
Did Dr. King mention how long his patients who respond are taking the drug? I know there are some people who have been on this drug for a few years with no side effects. Just wondering if he mentioned anything. Does he know any patients taking Tofacinix from Beacon?
Thanks for sharing the information from your appointment.
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