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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 Peachfuzz on
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My specialist said you need at least 3 month to show any results from topical jak inhibitors
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My daughter is 13. She tried topical for five months when she had large patches of loss with no response at all except irritation and rapid hair loss of all other hair while on it.
We were the first the lab in Philadelphia compounded it for and there were several formulations.
I'm not sure I agree that I would expect hair to fall out when oral is stopped... Perhaps it varies based on the triggers for the disease, etc. it may not be a cure but if the pathway is affected to get the signal to grow hair, why would it automatically revert? Xeljanz miracle: have participants on the trial all seen this? Thanks!
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Permalink Reply by Xeljanzmiracle on
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I'm not in a trial and I do not know the individual results for all Xeljanz trial participants. All I can say is that to my knowledge everyone on this forum that stopped using Xeljanz eventually lost their hair when they discontinued.
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Permalink Reply by Jcortez05 on
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Hi it's 3-1/2 months for me here is what I have so far
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That's great Jcotez05. I remember when you first started!
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Question.. Did everyone's hair fall out competent from scalp or did it break off first ? My hair broke off low then after a month of so those broken off hairs fell out but I was severely low on vitamin D (a 10) and am wondering if that made my hair break off . I've been on vitD since December and it's finally up to normal so I'm curious of that played a role.. Also my ANA has increased since they first tested which it was slightly elevated ( after I was 3 weeks gluten free) and now it's 1:640
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Permalink Reply by kimberj on
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My hair is breaking off at or near the scalp and then a week or two later, the remainder of the hair and shaft fall out.
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this is i find funny about this thread lol
(1) people freaking out losing hair.
(2) some people claiming to order xel cheap from turkey yet she doesnt give the site address
(3) some people happy seeing growth
(4) more newbi come to thread and bitch about xel therapy not having insurance
(5) more people play same tune saying its so expensive and crying i cant buy it
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Alladdin, I am saddened by the fact you find all the above points funny, it brings tears to my eyes. Part of why we cry over having this condition is because of the fact of what will happen when we come across people that have the same mindset as you.
I hope you don't suffer from Alopecia, because if you do and you still find all that funny, then I wonder where your empathy is.
I can only speak for myself when I say I have been through some really heard things in life, but my heart has never ached and been broken as much as when i started losing my hair. I am well aware that this is not a life threatening condition, but the pain is not any less.
If you do suffer from Alopecia I will pray that you as well can overcome this. Along with it I will pray for you to re-connect with your empathetic side and find some humility.
Wishing you and everyone else a blessed day.
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