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 Patchylatchy on
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Thank you again and again!
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Northwestern University, Chicago!
The dermatology department has a hair loss clinic.
They started a research trial of Xeljanz in January, 2017.
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Has anyone successfully been prescribed Xeljanz by a dermatologist in Europe particularly in uk or Ireland ? I spent a small fortune on a private consultation with a renouned top of their field dermatologist recently in Ireland only to be told to basically keep my hair short (even though I'm 100% smooth hair free) and here's an out of date treatment prescription for protopic and dermvate. Very disheartening. My condition is the worst it's ever been and my eyebrows are almost gone too so I'm desperate to kick this condition to the kerb quickly. Any advise on European dermatologists who are up to date on Xeljanz would be greatly appreciated. I've top of the line insurance to pay for it and would be willing to travel Europe wide. Thanks in advance
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Permalink Reply by 3ebdie on
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I would suggest you try your luck in Turkey. One box of Xeljanz of 56 pills is around 500 euros and you don't need a prescription. The pills are legit as a member on this board had them send to pfizer for a check. Apparently there is a pfizer factory in Turkey. Try to search here on the terms Istanbul xeljanz. Quite some members went down this route already. All the best
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You will not get a Doctor able to prescribe you Xeljanz in the EU at this time, as Xeljanz is not an approved medication currently (It is up for review again, so hopefully it will be approved in 2017), in relation to the Xeljanz, I travelled to Turkey and purchased 6 boxes for around £2750 in September.
One route you may consider is to get an appointment with a dermatologist in the states who prescribes Xeljanz, and arrange a trip, you should be able to get 4 months of Xeljanz under the Xelsource scheme (think it's like $12,000 free), this would get you started, you could then go to Turkey and get Xeljanz. Despite popular belief, the pharmacies in Turkey are very regulated and professional, with a set price for medications. I personality got mine on holiday in Marmaris, one word of caution, the Pharmacist I went to wanted to see evidence that I was on the medication (I was able to show the Xeljanz with my prescription label on it) Hope this helps.
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Thank you all for the reply. A trip to the states is being considered with a view to getting a derm to OK the treatment. I will look up Xelsource scheme Villa Fan. From what you are saying I could get 18-20 boxes for the allowence of the $12000 FREE. That is a very good plan if it is do-able. Would the fact that I am Irish and not an American bear a negative to me being able to become a Xelsource scheme member ?
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I'm looking into both options too, however I want to prevent paying for a trip, only to find out that I don't comply or have missed a step there. So from my understanding, even for Turkey you need proof that you're on the medicine? Even if I have not been to the US? How do we do that?
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Permalink Reply by Xeljanzmiracle on
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No Dolly. You just go to the pharmacy in Turkey and order it. That's it. You don't need a prescription, you don't have to be using Xeljanz already at the pharmacies other people on here (besides Villa Fan) have used. You might have to wait a day or so for them to get it for you. That's it. Last year around this time, a couple of people on this forum went to Turkey and bought some. I don't remember the page numbers, but one guys name is Ujain. I think the woman's name is Sophie. Search for their names. I was encouraging them to meet while they were both there. They listed the hotel(s) they stayed at, and also the name and location of pharmacy they used.
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Hi xeljanzmiracle thank you for details.You are alwayd so helpful.How come we are able to get medicine from Turkey without prescription? Just out of curiosity doesn't the pharmasicit ask for prescription beforw giving us xeljanz?
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You are welcome. I'm SO APPRECIATIVE of Xeljanz growing my hair back that I want to help others experience the same joy. I was totally hairless (AU) for 6 years and was praying for a cure/treatment. To answer ur question, Turkey is a different country with different laws.
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I have been in Turkey a few times on holidays over the last 20 years. It is a beautiful country and the people are very welcoming but I would prefer to get this drug on the co-pay system. Are you aware if a European resident can avail of this co-pay card if I was to get a prescription from dermatologist in the US ? I would be able to travel to the US on a holiday to coincide with a dermatologist appointment but the only snag to this plan is would I get the co-pay card !!!
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You can get download and print the co-pay card from the internet and activate it by phone as I outlined below.
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