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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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Replies to This Discussion
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Permalink Reply by Theresa on
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Hi Nicole - I'm curious about what BCBS plan covers Xeljanz. I had CareFirst and I was able to get approval for them to cover Xeljanz. Because of the significant raise in bi-weekly deductions for health insurance, I switched to BCBS on Jan 1. They denied my derms request to dispense it, now I have to write a statement asking them to reconsider and show why it's medically necessary. I have BCBS, basic self only plan, do you know what BCBS plan covers Xeljanz? How were you able to get BCBS to cover Xeljanz? Did you have to write a statement? What did it say? I've only been on Xeljanz for 3 months, and am starting to get fuzz on my head, my eyelashes and eyebrows are starting to come back, I've made such progress.
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Hi Theresa,
My son has alopecia and we have BC/BS PPO who covers the drug. Initially it was declined. The derm photographed my son's head and wrote the appeal letter including the photo. They declined and provided research materials to support their position but actually made the case for prescribing the Xeljanz.. After a few months after progress was visible, the derm wrote another letter and included the photo leading to approval for coverage.
In the meantime, while this process was going on, I got online and activated a Xeljanz Co-Pay card where they cover $15,000/year for people who have insurance. This carried us through until the insurance company agreed to cover the Xeljanz.
At our initial appointment, the derm said to expect denials and appeals. That's just the process.
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Hi, how did you get Xeljanz with a Co-pay card? I got one from my derm. but my insurance still blocked it. I have Cigna. Thanks
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I Googled "Xeljanz Co-Pay card" and was led to the website. It was so simple online that I thought it couldn't possibly be real. They texted me the the expiration date, BIN #, Group # and Member ID #.
I gave that info to my pharmacy and they inputted that info. The first time it was declined and then they submitted a code and it went through.
It is worth $15,000/year so I don't understand why an insurance company would decline that.
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I have a co-pay card, my pharmacy tried to get it thru the system. But since it's a co-pay savings card - insurance has to approve. My insurance - Cigna - denied.
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I found that even if my insurance covered it (I have medicare) the co-pay would be more than I could afford.
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The co-pay does not work for people who are on government insurance programs for which medicare may be. However, Pfizer does have a hardship program for people who cannot afford the medicine.
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Hi Christopher's_mom - thanks so much, this is helpful. I'm afraid that as it stands right now, my derm is leaving it up to me to write the case. I see her next week and I will insist that she take pictures and help me with the case. CVS Caremark have been the ones dispensing me the meds and I would get the e-mails and texts asking me if I needed them refilled on a monthly basis, just like clockwork. Sadly because this all transpired yesterday, I received two nice little e-mails and texts from CVS saying that my account was on HOLD. I will try your approach.
Thank you!
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In my opinion, it is your doctor's responsibility to work to get you approved. Having said that, my son's physician asked him to write a personal accounting of the effects alopecia is having on his life to include with his photo and appeal letter. And that we did.
Let me know if it works. We got declined twice with the co-pay card. It needs to be inputted properly at the pharmacy.
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