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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 Chubs on
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Has anyone checked with Dr. King if the Xelianz from Turkey is the same - not a knock off?
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Permalink Reply by Xeljanzmiracle on
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EXCELLENT PLAN! Sounds like you have carefully thought it all out. How much is a month's supply (60 pills) in Turkey?
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It's about £380 or in usd $580 .
you don't need a prescription from a doctor.
You will need it order it and takes a few days to come.
It comes in a splinter pack of 56.
I think it's worth a try.
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Hi Sabri,
Good luck with the plan. I was just wondering if you have a name/website/any information at all about where to go and who to see in Turkey? I would like to consider going there too but have no idea where to start!
Thanks!
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Hi smudge
You can just order it in a pharmacy.
You don't need a perception in Turkey.
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Hi Steve,
I understand what you mean. I am in Ireland where it also is not approved. I don't have the money to buy it in Turkey either. I have informed my doctor about the trials and this site. I even printed off the official study. I asked her could I see a rheumatologist to discuss the matter as they may have an alternative that is similar to Xeljanz. Surely if it is used for RA in the states there has to be an equivalent here used for Irish RA patients. Anyway, she sent a letter off to a friend of hers who is a consultant rheumatologist in a private hospital in Dublin. He wrote back to her saying what we already know, that this product is available in the States but that he does not know of it being used for Alopecia but that he would be interested in discussing it with me and seeing what can be done. I have to pay a private consultation fee which may delay things (I am a mature student) but I will post any information when I get any. I'm going to print and send him the study and I also am going to do the same for a Dermatology appointment I have in Dec. Here, no one even doctors, consultants, the shops that supply hair pieces know anything about the study. That has to change and I intend doing something about it. I'm in my third relapse and nothing really bar a cycle of small regrowth and shedding for 5 years now. We need to get the people that can do something about this such as doctors and consultants informed in Ireland and the UK. I've tried everything under the sun including the nutritional route and nothing has worked so far. I really want to try this.
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Permalink Reply by Steve on
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Yvonne,
I am exactly the same as you. I just don't have the money to go to Turkey and get this treatment. Thats good news that you're doctors are so engaged and interested in exploring more treatment for you. I have an appointment with my local GP on the 16th of September to discuss new treatment options as i haven't been to see him in a while. When is you're appointment with the rheumatologist? I would love to connect with you and see where this goes! Please add me as a friend or DM me if you are also interested. I am 24 years old. I would like to see the information you printed out to you're doctor as i will maybe do the same thing. We feel the same where there must be something in this country that is almost similar to xeljanz to help us. the only treatment that I have tried as been ointments and creams. That is all I have been given. I am hoping to go down the route now to get something helping my internally than externally.
I hope all you're appointments go well.
Connect with me if you would like to talk more!
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Hi,
I live in Ireland to, may I ask who the consultant rheumatologist is? Also, you may know this, but I read in another discussion that a person who lived in Ireland with multiple Auto Immune illnesses (including Alopecia Areata) was treated with Ruxolitinib, which they described as a great success.
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Permalink Reply by Jckah on
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Anyone experiencing a tight feeling in their chest? I'm just over 6 weeks on xeljanz and the past two days it feels like there's something heavy sitting on my chest. It doesn't hurt, I have no cough or anything, it's just a weird feeling that I've never had
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Never felt that. I felt a little run-down for about a week but then had energy...not sure if it was related to the meds. When do you get your blood tested again?
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