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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 Kathy on
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I have been to,d a functional Dr is a good thing to do but I don’t have a clue how to find a good one. Any suggestions? I’m in the Chicago area.
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It was 2012 and I just can't remember anymore. I wrote to Whole Foods and told them what had happened as a result of this supplement (my dr documented through research when my AST shot up) but I remember seeing it on the shelf a year later. You really do have to be careful! Sorry I can't remember the name.
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Permalink Reply by NicoleT on
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So I have had 2 different versions of BCBS.
The first version I had, covered xeljanz after a few appeals from my doc. Then I lost that insurance do to a change in income.
The 2nd version I had, denied me the coverage after several and maximum allowed number of appeals from my doctor.
So now i hate them ha and I've switching to united healthcare in the new year. Let see if they will cover.
But in general my doc says that he has had BCBS approve xeljanz for several of his patients.
It just depends on which plan you have
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NicoleT,
The HAP from Pfizer denied you because of your income? I have heard before that they will not just outright deny you but make you pay up a little. Did you provide a expense document?
(if that isnt the case)
I understand that if your insurance denies you of coverage you can get Xeljanz for free from pfizer, it is a battle but its worth it in the meantime... But you need the cooperation of your doctor.
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But you have to have Rheumatoid Arthritis. They will not approve it for Alopecia, at least they wouldn't for me.
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They approved it for me and they know I have alopecia. They needed to know that my insurance denied me first before they approved me. It was nerve wracking. I would double check..
They actually call me and ask how I am responding to the medication because I am using it off label use. They even ask if they can contact my doctor and talk to them to get more information based off the research. They want people to use the medication for other issues.
It was a horrible experience but as far as everyone I ever talked to, they had been accepted even for Alopecia they just had to provide the proper documentation and go through a lot of loop holes such as providing income, insurance denials and of course other reasons.
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