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 Aurora Sophie on
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Yeah great:-)
I would like to meet ujjain :-)
Here is my hotel:-)
http://www.lazzonihotel.com/gallery/
Quite cheap since this is not any holiday dream for the moment:-)
I dont know about US dollar and english pound :-)
But in the worlwide norwegian currency I paid 4000 kr for flight and one week in this nice hotel:-)
that is aproximately divided by 10 the english currency:-)
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Hi.
No in Norway you can not Get this medicine.
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Permalink Reply by Xeljanzmiracle on
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Hi Aurora, why are you staying in Instanbul a week? Did you decide to make a vacation out of your visit since you're going so far?
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Yes:-)
That was my main-reason. But also I wanted since this is the first time, to be sure to get all the medicine. The pharmacy was a little afraid of ordering the medicine, because so costly, also for them, but anyway they did. So I also wanted, since first time buying this medicine to be as secure as possible on getting it all. Then, later visits to Istanbul after this first contact will of-course be shorter. I talked to a very nice person in the main office of the pharmacy branch, so it is nice also to have talked personally to some people, then they know us, and things will be easier in the future.:-)
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Permalink Reply by Toxicmosquitoaf on
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You should do a youtube video about your trip, like a vlog hehe
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Permalink Reply by DJ88 on
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Ok XM, my questions was:
1.) How do you get the Co-Pay card to last the whole year (12 bottles of Xeljanz)? Like what tips do you have for someone just starting?
2.) About the Cream, I read it's $300 a tube. How long does this tube last? Is it a week or one whole month?
3.) And is the cream as effective as the pill and can it be covered by health insurance?
These are just a few questions I have about Xeljanz. The answer to these would also be good for other new comers to her as well.
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Hi Dj88,
1. Its not 12 bottles, its $12,000 worth of Xeljanz (4 months worth). Its NOT going to last all year. But hopefully that is enough to find out if it works for you. Because in many cases, (myself included) people experienced regrowth within a month or two. BUT NOT EVERYONE. What I suggest is that people try to get on Pfizer's HARDSHIP PROGRAM, which gives you unlimited Xeljanz as long as you are in a certain income bracket. Call Xelsource and ask them how to apply. I have heard that you can make up to $75,000 a year and still qualify, but check with them. I have been on the program since July, they ship it to me ABSOLUTELY FREE every month and they are even giving me enough for 3 PILLS A DAY since my doctor upped my doseage in December. I will have to renew my application next July, but that is only a formality.
2. I haven't tried the cream, I can't say. If you are totally bald (AT or AU) some have said you might need 3 or 4 tubes a month to apply to your scalp and eyebrows twice a day. So far, to my knowledge, no one has been on the Topical X cream long enough to report any results. We only know that it worked on some mice. That was published last October by Dr. Christiano. Dr. King used another Jak inhibitor cream, Topical RUXOLITINIB, on a 17 year old girl and it worked. Now he is testing Topical X.
3. We don't know. The cream is in Trials right now with Dr. King. THERE IS NO TOPICAL XELJANZ ON THE MARKET for general public purchase. Some doctors have prescribed it for their patients and had the Topical X made up INDIVIDUALLY for them by a compounding pharmacy. If it is proven to be effective, we hope insurance companies will pay for it in the future.
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Hi xeljanz miracle, that was a good post you have added but what I would like to know is why everyone is jumping on the topical x bandwagon and not the topical ruxolitinib which we already know works,ruxolitinib is approved in the UK although I don't know how expensive it is.
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Kev, My doctor won't prescribe the Ruxolitinib topical if you're already taking Xeljanz orally. That's why I'm trying the Xeljanz topical. Also Ruxolitinib topical cost that girl several thousands of dollars.
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4417286/
Why we hide us his(her,its)? ???????????
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And one would think all the medical research takes place in US. I think this qualifies for a new thread on here. Forget Xeljanz! Forget Turkey! China! ;-) I wonder why people are not commenting on this? This is so much more promising than a lifetime on Jak inhibitors. The only questions are whether this is a long term solution, whether it's reproducible outside of China ;), and how soon this treatment becomes available.
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