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 Rascalx2 on
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I continue to take xeljanz because I feel like its only hope I have right now... it's desperation at its finest.. i have shaved the peach fuzz that gross on my head because it looks ridiculous! There are stray strands randomly placed. It looks like Im having chemo. Still hurts deep when I see someone that has not yet seen me this way. They are always concerned and supportive but it becomes obvious tht I look like I have a condition and not shaving to be "trendy". I can pick up on peoples pity... I dont want it, but I can feel that they are shocked and probably think to themselves.. "poor bastard".... I am trying so hard to overcome this. I know havinh confidence and posessing confidence overcomes this shit, but sometimes my well is just dry and we where that out in the open ... it can feel so vulnerable
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Permalink Reply by singh on
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Keep the faith Rascal, there will be a treatment out for alopevia in the coming years. I've heard is possible by 2020/21 although that might sound too soon in terms of clinical trials but now that scientist are looking more deeply into this I have heard that could be the earliest when a treatment becomes approved.
I do feel like these medications can't be healthy for long term use so ultimatly I feel stem cells will be the cure but with all these Pharma companies making so much money I can't really see why they would let stem cell cure for alopecia come out just yet. Maybe by 2025 or something down them lines.
Kind regards
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Stem cells just are using in china ...but cost very high and again in clinical trials...they if a person wants make it but said me for au need almost 3 sectiones(every section approx 10000 doll).
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Permalink Reply by Xeljanzmiracle on
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Football Fan, why are you spending $3,000 for a wig? I buy most of my synthetic ones for $35 and can even find real human hair wigs for less than $200. My hair was still growing on Xeljanz, but very slowly because my doctor decreased my doseage last year because of my cholesterol. I have full regrowth everywhere except under my arms and who needs that, lol! In January Pfizer's pharmacy started sending a 3 month supply ALL at ONCE thru the Hardship Program so, I'm taking 3 a day again and my growth is re-accelerating again. I just want to say that my heart goes out to slow or non-responders. I know it's hard, I was AU for 6 years. Keep the faith everyone!!! Love, Valeri P.S. Attached is picture of me in my new "Frenchie" wig cause I leave for Paris on Tuesday!
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Picture of me in my new "Frenchie Wig". Heads up everyone, NORWEGIAN Airlines has SUPER LOW fares to Europe and U.S. right now and in the fall. I got to Copengagen,Denmark directly from San Francisco/Oakland for only $169! From Copenhagen the tickets to Rome, Italy were only $58 Euros. I'm going to Paris from Copenhagen for only $24 Euros on Tuesday, May 16th! The prices are going up this summer, but will drop again in September and October. I'm already planning my trip to Amsterdam, Holland for $30 Euros! When u get to the Norwegian Airlines website, click on the low fare calendar tab to compare prices for entire month u are interested in this coming fall.
We have this disease, but we can still have fun! - Attachments:
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I'm wondering the same thing.
Has X stopped working for you?
It appears from the forum you've been such an advocate for it and on it for quite some time.
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I don't get it, if you get a 3 month supply and take 3 a day, you will be out of Xeljanz in 2 months and have to wait a month to get a refill.
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Hi Rascal,
Northwestern in Chicago is doing research on a different, yet similar, drug as Xeljanz. My son is responding to Xeljanz and our insurance company is now covering it for 6 months so he won't be participating in the trial.
It is double blind so 50% chance of placebo, 50% chance of the actual medicine. They began enrolling people in January, 2017. My son's physician said pharmaceutical companies are moving quickly now since effective medications and solutions are being found.
Do not give up hope. And if you live near Chicago, give them a try.
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J,
Your question was if anyone knew of a derm in Colorado who could prescribe Xeljanz.
I don't know of one.
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