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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 Anisha on
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My doctor told me that if you can demonstrate the drug is effective for you, insurance companies will typically start covering it. So some people do it in reverse. They shell out the $$ for the meds, and when they get results, their prescribing doctor can write a letter to the insurance company with the documentation of your progress. Then from there on out they might cover it, or cover a portion of it. So at best case, you may only have to pay for a few months supplies.
But the more people try Xeljanz and get results, the more publications on it result, and the faster the medical community and insurance companies will recognize it as an effective legitimate treatment for Alopecia. Only then will insurance companies start covering it. But we need people to try it. We can help each other.
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I think it's absolute horseshit that this trial has so much interest yet Xeljanz is so hard to approve when people are already using it for RA and obviously it's safe enough to approve for that. But i bet u all those congressmen who can't get it up have no trouble approving things like Viagra. Sorry...just having a frustrating day concerning alopecia. Forgive me, but after constant hair masks and trying to eat healthy, im tired of thinking about this so much. :(
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Permalink Reply by AlopeciaDestroyedMyLife on
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It still may be approved for alopecia eventually just give it time .
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Permalink Reply by Lindzzej on
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I agree, extremely frustrating and I too am exhausted thinking about it all day everyday :( really hope they are doing all they can to get it approved for use with Alopecia sooner rather than later..
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It's a catch-22. People need to use the drug it to demonstrate that its effective, so insurance companies will start covering it. Yet most are precluded from using it because its not covered by most insurance plans.
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Which pharmacy did you use? Hopefully I don't run into that problem with refills. I had a general issue just getting anyone to process the card. Once processed they mailed me my first month and said I will get the second bottle mailed the following month.
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I use the CVS Caremark Specialty Pharmacy. They told me that also - but when I refilled - I wanted to confirm there would be no charge - and sure enough - they were telling me they could not get the card to process. Maybe now that a few more of us have been doing it, they will get their act together.
-T
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I had no problems getting my co pay in use. It was as simple as giving them the number and receiving the tablets the next day. I was able to max out my card and get all the boxes at once. It's worth having a look around for some other pharmacy's who are lets say.. more competent.
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Hi all,
I am now 1 month with Xeljanz prescribed by Dr. King. And....I SEE SIGNS OF REGROWTH!
Uhuhuhuhuhuh! So happy! Let see how it will go! Anyway I want to comment on something
I red on the blog few days ago. Alopecia universalis has horrible consequence on the well-beings
of our lives. I hope this is enough clear for everybody who had suffered from this disease. Now, I agree totally with ADML when he says he had to embrace the inner truth of his condition, having no hair
(especially no eyebrows and eyelashes is very hard). Off course alopecia has opened our eyes, our hearths. I am have now much more compassion for people arguing that alopecia has destroyed their lives. I can easily feel their suffrance, even if despite how hard it is and it was for me I have done everything I want in my life and observed that this is harder for me than for other people. However, ADML, feel free of showing us how hard it was for you but....also remember that YOUR alopecia will benefit tremendously if you start to think that ALOPECIA was a blessing for all of us. It's hard to think in this way. I want to solve this issue in my aspect and in my life, but everyday, now that the medicament is available, I pray to leave alopecia behind me while still thanking this disease for what it has given me. It has amplified my whole life. However, respect to everybody, compassion, let's go more deep and tell society what does it mean to live without hair. I need all your blessings, and I will pray for all of you everyday. Good luck to everybody. I hope the firsts of us who will get their hair back will find enough energy to go out and deal and push for better treatment and less expensive ones. Now, this is how I'd love to transform my alopecia in a force. All the best
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Fantastic Davy , congrats! :)
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