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 cmdd20 on
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Not sure if the 212 in your moniker means that you live in NYC but I can give my experience anyway since it may help you in whatever state you live in. My insurance company (Aetna) denied coverage. I appealed, they denied again. If you want to then appeal the insurance company's decision, the next appeal goes to the NYS Dept of Finance. They reviewed my application and reversed Aetna's decision to deny coverage (I believe that decision is binding one way or the other). I did this with the assistance of my dermatologist, who truthfully did all the work in submitting applications and appeals.
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Permalink Reply by Xeljanzmiracle on
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Knightsfan, to qualify for the Hardship Program, in which you receive unlimited FREE Xeljanz delivered to your door (also free) by Federal Express, your insurance HAS TO BE DENIED! You send the denial letter, along with your application and proof of income to Xelsource, by fax or mail. But get your free Xeljanz using the Co-Pay Card for 2016 first. That's right now, before the month ends.
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Hi Xeljanzmiracle,
Thats great, I had no idea. I will be sure to call tomorrow about the hardship program. Thank you for all your help!
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Knightsfan, u can download the application for Xelsource's Hardship Program and the Co-Pay Card. After u activate your Co-Pay Card, take it and your Xeljanz prescription to a pharmacy (I think CVS is familiar with it, and u could have your Xeljanz TODAY! Then complete steps for the. Hardship Program application and send that in.
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Hey Cmdd20, I actually live in Florida. I read that Florida has a similar appeal process though. I will look into this option as well. Thanks for your info, I really appreciate it.
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Hi,
I hope you are doing well.
I'm in NYC. I'm currently seeing a dermo at Columbia. What dermo did you go to and did you get your xeljanz approved for Alopecia or something else?
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It appears that most of the people with successful regrowth stories using Xeljanz had AU @ 5-10 years as an adult. I may be a rare case...I've had AU since I was 6 years old...I'm now 51 years old. However, my scalp hair and eyebrows grew in when I was 18 years old, but fell out a year later. Last year, I had a glimmer of hope when I noticed my eyebrows and eyelashes beginning to grow...they fell out a few months later. I'm wondering if anyone has had success using Xeljanz with similar AU history.
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Hey Dwhite. U never told me how your doctor's appointment at UCSF went.
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When do you think this would be used as formal treatment for AA meaning insurance companies and doctors will directly support kmor prescribe it are we talking 10 years or 20 years?
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Permalink Reply by Alo-mom on
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There are clinical trials going on now. Those results are key to FDA accepting that these drugs do in fact grow hair. The good news is that this drug is already approved for RA, that gives us a leg up. I say 2 to 3 years if in fact people get true growth. That again is just my guess.
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Thats so good to hear. I wish they can elaborate on that and be proactive. Im hoping its not 10 years or so..like you said its already fda approved for RA so this one big step
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