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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 kimberj on
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Hi Starshine. The insurance companies are hesitant to pay for Xeljanz because 1. Cost 2. It isn't FDA approved for the treatment of Alopecia, yet. Although some conclusive evidence is present, it will probably take a couple of years before insurance companies will pay. Right now, my only hope of getting it covered is my actual diagnosis of Rheumatoid Arthritis. However, my insurance company would rather I used another drug, although I have experienced great overall improvement of my RA while taking Xeljanz. The hair growth has been an added bonus. Kind of a "two birds with one stone." I will keep everyone informed.
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Permalink Reply by Fenster on
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This is all very encouraging for my little boys. Continued prayers and thoughts for everyone here. My 12 year old has lost everything and is a shell of his former self. I wonder if he will have to wait until he is 18 to get on a trial or they will have less invasive measures like creams in a few years.
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i've heard from my son's dermatologist at columbia that some more things were coming down the pike, but they will have to go thru trials first (18 and older) hopefully something will work! i went to the NAAF conference this year and there were tons of kids. maybe that is something you can look into for this june. i think that it is going to be in california, but i'm not sure.
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Permalink Reply by JeffreySF on
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Yes NAAF Conference is in CA next year. The next generation treatments they are working on are topical applications. Or so I'm told anyway...
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Is their any date on the Alopecia conference for CA next year ? thank you
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I'm 4 months in- it's working a little bit- but seemed to plateau around the 3 month mark. I've recently switched from 10mg-15mg a day- which is improving things slightly. I had full AU for the past 5 years, so maybe it would take longer for me. I'd love to know if anyone has had success with this drug where it kicked in a bit later? I'm going to try one more month and maybe switch over to ruxolitinib... Please let me know if anyone else has tried it and had delayed results- thanks!
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Hi Geoff,
Are you paying for it out of pocket or is insurance covering it? If so, how did you get insurance to pay for this cost? If it all grows back, do you plan on continuing to take it? Thanks for you help!!
Jason
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Hey Jason,
paying out of pocket at the moment- trying to set up a trial... insurance in canada will not cover a cent for off label use of a drug... Ill experiment with lowering dosage if it restores.... if i have to keep a high constant dose- Ill stop... If it were a few pills a month id consider staying on it
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Permalink Reply by Lindzzej on
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Geoff,
I've been doing a ton of research on Xeljanz because my dermatologist has prescribed it to me as well but my insurance company won't cover it (which im fighting) and it is around $2,300 a month it seems?
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Lindzzej, I have been prescribed it too, but insurance will not cover. Any suggestions on getting them to approve it?
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I have been fighting the insurance company for months and I dont intend to stop until they help me or approve it. Have you filed a grievance with your insurance?
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Right now I am writing an appeal of their denial with the help of my doctor. I am probably going to switch from my husband's insurance to my own employer's insurance. I still don't know if the new one will cover it, but it is worth a try. I don't understand how other people on here are getting this drug.
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