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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 Frida Rupert on
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So sorry Rascalx2,
thats so stressful. I think on the biggest study they did on
xeljanz some did relapse but recovered by increasing dose and introducing (or reintroducing) steriods. Best of luck... this condition haunts us...
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I too was AU and have been taking it since last March, my hair started growing last August and I have had full regrowth. Around 5 weeks ago I noticed A patch and now I have patches all throughout my hair. My dermatologist has increased my dosage which will take a few months to kick in and I am also on 15mg daily of pred. Although I’m still shedding, I feel As though it’s beginning to slow down.
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Sorry to hear that Sasha but Atleast you know xeljanz works for you and hopefully with some steroids it will stabilise and start growing agand ! Plus in the next 5 years am sure there will be better jak inhibitors out for alopecia fingers crossed. Can I ask how long you had alopecia before xeljanz ?
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Yes I really hope so too! I had my first episode of Alopecia Areata in September 2016, it was very severe, losing around 70% of my scalp hair. I started having regrowth around 2 months later, because of the immune suppressant I was on as well as 25mg of pred, but around 2 months later the medication stopped working so in January 2017 I developed Alopecia totalis, and when switching over to the JAK inhibitor I developed AU, up until last August when it began to work.
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Oh Sasha, that’s really hard. I guess we are all in that boat- we can all relapse and be back at square 1. Reading the studies it seems upping the dose and adding steriods is the way to go in a relapse but it’s so hard with hair because it grows so slowly - recovery seems like an eternity... like Singh said ( and my immunologist said too about me) - xeljanz works for you- flares will come and go but hopefully the treatment will stop the flares from going too far and lasting too long. Really glad the shedding is slowing, I’m sure the worst is over, and regrowth will kick into action ASAP.
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I'm so scared that I will have a relapse as I'm sure everyone does. My hair still hurts yet my head is like 95% full.
I have days where I forget I have Alopecia and feel normal and have days where my paranoia is through the roof.
It still sucks...
I'm only 5 months on xeljanz 3 months(11mg) the last 2 going on 3 with 15mg. I am still scared. It's all I needed and had good growth on standard dose too. But the thought that it can get worse and relapse scares me.
I believe in a year or 2 we will have a Alopecia specific medicine.
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Hi very beautiful regrowth do you have as side effects acne constipation,
I am at 3 and a half months and I still have regrowth -
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Amazing regrowth new jack ! Try enjoy it and train the mind that it won’t fall out again! Trust me me mind is a powerful thing. And it’s been noted that things like stress can cause hair loss. Even doctors use the mind in the likes of placeboes lol.
To anyone taking xeljanz enjoy your new hair ! And just think New highly selective and more powerful jak inhibitors are on the way god willing everything goes ok in trails.
Kind regards
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New Jack! Your hair looks fantastic!!!! But totally understand your feelings- I get that too... the feeling of being haunted almost by this condition. I just try to tell myself over and over that if I relapse just up dose, steriod pulse and it will regrow.
i honestly believe that many of us who have AU or AT have PTSD from the experience. The panic, anxiety ect is part of that. I am currently working through the whole thing with a psychologist and using guided meditation at night on really hard days. Helps a little, doesn’t fix it but helps.
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Newjack, did you have Alopecia totalis at anytime? Your beard is magnificent! Are you taking the 15mg 3 times a day?
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Permalink Reply by AnakinWildstar69 on
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i know the feeling, bro. the fear of losing your hair will actually worsen things. it's like an agoraphobic thinking about a panic attack-which CAN(not always) manifest itself into having one. You got this bro!!! After every paranoid thought about the possibility of losing hair, replace it with 'who gives a fk', and even pretend you never had it in the first place kind of mentality. You'll benefit from it, I hope.
LUCK TO YOU BRO!
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