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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 LJBMD on
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I contacted beacon yesterday to order xeljanz; this is our first time. I have not heard back from them and it is stressing me out. Does anyone know how long it usually takes them to get back to you?
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Hello LJBMD,
it took them around a week to 10 days to get back to me.
then another week or so of email discussions to refine my order & process payment
then they dispatched my order around a week later. Once I was in an email chain, they were super duper helpful. They even called and text messaged me to share the tracking details - great customer service.
I believe, most likely due to popularity, that they now have some minimums around this medication in terms of shipping quantity etc - see what they say.
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Thank you for the information. I thought we were not allowed to order more than 6 months at a time? I’m happy to buy as much as they’ll sell...
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Hi LJBMD,
They are a bit slow at first with newcomers - once the order process gets going they are very good. Takes up to a week to contact, get order details right etc, then, usually another week to ten days for parcel to arrive. Once you are a known customer it’s all a lot smoother. They also can go quiet until the money exchange is completed- ie the money arrive in their bank account (which can take a few days due to international transfer etc), once the finance is confirmed they are quite efficient. I think this maybe due to people wanting orders and then either not going through with it or not paying the right amount etc. I would say a three week turnaround from first email to arrival would be the longest. Usually for me it’s around 3 days to communicate order, 2 days while money goes through and then a week to 10 to arrival. I am luvky to have a wonderful long term family friend send meds to me ( sorry guys- strict instructions were given that this was a favour only for me due to length of family relationship). I do buy Beacon from time to time to boost my supply in case of shortage. I wouldn’t order too much first go (any more then 6 months) just in case there is an issue with customs. Most people get it through no probs, and many countries actually are fine with personal import for personal use of most “non- addictive” and meds unable to be made into amphetamines etc. there at are time frame stipulations - here 3 months at a time - up to 15 months suplly in 12 months, so even if customs open it upnif there is a medical script to back up personal need I would assume they would process it if the law was followed. That said, I’ve been importing my meds totally legit for almost 18 months and none of my packages have been opened, from either my personal friend or from Beacon....
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Frida - it’s a good point you raise about customs.
I am in the U.K., have two family members that need the medication. I negotiated with Beacon to have one full carton of 36 packets to make the most of the shipping costs. Also, my sons are tall and well built, they may well need to get up to 20mg per day, so I wanted a good initial supply.
However, this quantity then added complexity at U.K. customs. I waited 5 weeks, could see from the tracking number they are in the U.K., but ‘held’.
Finally had an email, and after lots of discussion with the boarder agents, they are going to release my carton to me and we can finally begin our Tofacinix journey. It’s not illegal to import medicine without a prescription here, you just need to prove that you are not supplying or selling them on. And obvs that quantity raised that very question.
I took a rather big gamble as the box and shipping cost me 605USD, but you’d do anything for your children. I’d sell a kidney if it meant they could get their young lives back to normal, with hair again.
LJBMD - once you hear from the Beacon guys, check how many they will send you. I actually also wanted a longer supply, but it would have cost twice as much shipping. I think it’s around 40 packets per carton? So I’m going to buy every three months and we are going to give it at least 6-8 months to work.
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Has anyone had a full relapse while taking xeljanz I'm seeing spots coming up and I'm scared that I am relapsing and won't respond to the medication as much .
Like RA could this be just a flare or is this because I am now on a standard dose? I responded very well to the standard dose originally but wanted my hair to grow quicker so my doxdoc upped it, so I am confused .
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Hi New Jack, so sorry to hear of set back. I think it’s probably just a flare (anything physically or mentally stressful in the last few months?) or your body likes the higher dose. I think upping dose, maybe some steriod pulsing to speed the recovery and you’ll be back to having no spots. It’s a tough roller coaster ride emotionally- hold strong knowing that your body responds to the meds, just may need some extra to push you over the flare. Hope hair starts growing and 2019 is a great years!
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I noticed more hair xomoco out after my minor surgery in octoOct but figured it would stop after a few months.
My job reaooresponsibilhave picked up a lot at work.
I don't think my new spots are all that actice but I hate seeing them and they scare me .
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Hey Newjack,
Try to remember that you went from no hair to pretty much full regrowth on 16mg. Your results have been fantastic. I'm almost certain that the spots popping up are because you dropped the dose from 16 to 11mg too suddenly, but that's an easy fix. Might take a few months, but fully recoverable. Don't be scared. You already know why, and how to fix it so nothing to be worried about. It's temporary and you have control.
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Hi TC,
Yes I did! I will most likely switch over completely to 15mg 3 5mg pills a day instead of 1 11mg xr and 1 5mg pill. My spots have been getting bigger at a very slow rate. I have my doctors appointment tomorrow. The hair has not been falling out that fast maybe 1-5 broken hairs a day in those spots (maybe more, they are so small since they are on the side of my head)
There are moments where I worry like crazy, and then I chill out because I am still on the medication.
I can't wait to get back on the proper dose... Since dropping to 11mg I have had inflamed acne, which I wonder if it is related to anything... or just a bad coincidence.
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Happy New Year, everyone. You know, I was thinking about how many of us are on here, not that many considering the amount of people afflicted with this horrid condition. We are truly lucky to have found each other and I am grateful to all of you for all of your support this past year. I pray that 2019 will be the year they discover a cure but for now I will take my Tofacitinib, watch my diet and check my labs regularly.
Newjack, we all feel your pain. I have recurring dreams of my hair falling out again and they sometimes haunt me throughout the day. It is a constant struggle for all of us, I doubt life will ever be as carefree as it once was.
Mashloum, your son's hair looks amazing! He is lucky to have you as a father, it can't be easy watching your child go through this, congratulation and may this year put him in full remission.
A big thank you to Frida, who has continued supporting us even though she has pretty much fully recovered all of her hair and more! Thank You
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