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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 gowml on
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The doc and even some folks on this thread mentioned that "starting" with 5mg a day did not produce much response. It sounds like Dr. King and others suggest that you stay on 10mg/day dosage until you have signs of growth everywhere and then perhaps you can taper down to some lower maintenance dose, possibly. From what I have read and heard, 3 months just isn't enough time to get to that stage for AU sufferers.
It's true, there currently just isn't enough evidence on the appropriate dosage and I am sure it varies for different people and conditions.
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Tara, have you considered moving down to just 5mg a day after the trial to see if you can have continued success at half the dose? Lasting twice as long and making it more affordable. I don't think they have enough evidence yet to be clear what dose will work.
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good morning,
I know it wont always be successful but what's the best way to approach the insurance company hoping for xeljanz coverage? Have Dr. Brett King send his findings and why you should be on the drug ? I am going to see Dr King next month and want to make sure I do everything possible to improve my chances of success. thanks
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Hi- Follow up question- Do you have to get Xeljanz from a pharmacy in CT ? Can I bring the prescription home from Dr King and go through my local CVS or Walgreens ?
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Hi there,
Dr. King recommends using a specific pharmacy in CT as it has the lowest cost for Xeljanz that he has found, and the pharmacy is very familiar with the process and working with Dr. King for this trial. The pharmacy overnights the medicine to your door. You have to pay for the shipping (mine was about $40 I believe) but it is much cheaper then going to your local pharmacy.
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Thanks. do you mean familiar with the Xeljanz co-pay card issue? Im driving a long way for the appointment and wondering logistically how it would work.
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I had my fair share of issues with the card before getting it to work. The difficulty came when the Phamacies thought it was to be used on com conjunction with insurance like most copay cards. I had to explain how it was to be used to about ten different people at various Phamacies and it was not until I persuaded them to call Pfizer themselves that they understood. It took about 4 weeks of frustration.
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I had the same issues with the pharmacy - EVERY TIME I NEEDED a refill. Now that have put some kind of notes in my file that give them a number to call through pfizer to get an authorization code. I should find out exactly what the notes say so I can share.
-t
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Permalink Reply by serg navaro on
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Hi taraw, so I just dropped off my prescription for xeljanz that I received from my dermatologist and cvs was asking for my insurance which confused me, are they supposed to contact Pfizer? Or run it through my insurance first?
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The CVS where you dropped of the prescription will forward it to the CVS Specialty pharmacy. They will contact you about registering with them and take all your information. You don't deal with your local CVS after this unless you want to pick up th med there. Be sure to have the co pay card info handy when the specialty pharmacy calls and the will walk you through it from there. Hope this helps let me know if you have any other questions as I have just gone through this a few weeks ago. From the time I got the prescription until I got the medicine in my hand was a few weeks so be patient.
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