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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 IcarusAlopecia on
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Well, how about this!
I got my FedEx'd 3rd level state appeal decision today.....APPROVED!
I nearly fell over! I was not expecting this at all.The letter outlined my 9 years of Alopecia, supporting docs and mentioned to peer reviews and current studies. The final sentence on the 3rd page stated that the insurance decisions is to be overturned! Take that insurance!
I'm so happy as my results have been incredible on Xeljanz and now I can get back on it without paying the 3000.00. I also get reimbursed the one month that I paid out of pocket. I hope this gives others hope that you can fight your insurance. If anyone needs any info on what I included in my appeal other than my medical files I'd be happy to help. I really did throw the everything at them and did some research on my own and not to mention a very lengthy personal letter.
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Congratulations! My insurance carrier included the excellent results of Xeljanz with adolescents and denied it on my adolescent son! Fortunately, our peer-to-peer review caused our insurance company to reverse its denial, too. Our approval needs to be re-evaluated every 6 months.
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good job. looks like u put a lot of efforts into it!
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You can be a source for those who need to go through the same process. Congrats! Well done.
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Thanks.
I def would want to assist those who need it.
I had been through a medical state appeal before for my surgery, so I knew the "buzzwords" to use in my letter (quality of life, etc.).
I also included my own studies I found on pubmed and other info.
Glad to help anyone fight the system!
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Hey there thanks for sharing! I think a lot of people would or could benefit if you posted all the details on what you had to do, how you won and which state this was in. Maybe even start your own thread for it? I know I'm curious!
Ps Icarus a phish reference ?
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Sorry for the late reply.
No, it's not a phish reference. Although, they are in town for the bakers dozen :).
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Congratulations. It is very nice news! Csn you please show us the details of the letter. It is helpful to read the research they have done. I think they did alot of reading and tesearching and maybe we can have those infornation? Thank you
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Hi Patches,
I will definitely put something together.
Sorry for the late reply. I didn't get any notification of replies and I haven't checked the forum. I'll piece together something by this weekend.
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I am new to this site but I am in the process of appealing my insurance company for Xeljanz coverage. I lost my first appeal. I would love to know what your wrote and what studies you included. I have been dealing with AU for 13 years now with very little success. My dermatologist feels like I would have success with this drug. He told me he will be writing another letter to the insurance company, but I am thinking we should add all of the recents studies, etc. I know that it has been awhile since you posted this, but I would truly appreciate any help you can provide.
Thank you!
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My son has had AU going on 2 1/2 years now. We fortunately found a dermatology practice that was doing research on the disease and were well versed in trying to get insurance coverage approved.
From the very beginning, the Dr told us that the insurance company would deny it - they did. We paid cash the first month and then used the Xeljanz Co-Pay card to carry him through the appeal process.
Initially, my son's Dr asked him to write a letter about the effects alopecia is having on his life which was sent along with a photograph of his head.
The appeal contained a photo of the progress he was having with Xeljanz and fortunately they then approved it.
(You may want to spend some time on the later dated pages that are more current.)
Good luck.
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