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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 Carlie on
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I take Cholestoff, I buy it at Costco, and that seems to be helping. Mine was a little high once, too. But mine had a tendency to spike before I started taking tofacitinib.
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Hey what month did you originally start xeljanz and did you take over what period of time did you take the 300 mg boost?
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I'm assuming this is a medicine you have to be on forever or else you start to lose your hair again. Has anyone had any success getting off it and keeping their hair?
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Permalink Reply by Rascalx2 on
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I know if i go off meds i will lose it all, my derm told me that as well,
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Has anyone used Berberine as an alternative to jack inhibitors, with success?
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2 months on Tofacitinib from Beacon. 1st month at 11mg and second month at 15mg. Still no new hair anywhere. Every day spend time examining my head and body to find nothing. My cholesterol was a little high before going on the meds and my doctor presribed me crestor to help. He said taking the two medications together were not a concern. I'm also experiencing acne for the first time in my life. Hoping it's all worth it, fingers crossed!
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I was on xeljanz for 5 months before I asked my Derm for a steroid pulse. I wasn't seeing any results either but after the pulse, my hair came in really fast, eye lashes and brows returned too. see the pictures I posted.
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Thanks I'll keep that in the back pocket. I see Dr. Bordone in NY and my insurance doesn't cover out of state visits. I wonder if it would be a very heavy cost.
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There should be a Dr. he can refer you to that knows King. My UCSF Dr. knew all about him. https://www.concertpharma.com/patients/expert-video/
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Permalink Reply by Vanessa on
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Congratulations Carlie! Your pic from Dec 2018 looks like you had a thin covering of hair on your head - did you get some growth before you took the prednisone? Did the prednisone give you any nasty side effects?
I have had AT/AU for 11 years and I've been using Beacon Xeljanz for almost 7 months (15mg/day). I've had some response (have full eyebrows again!) but the growth on my head is very thin, still patchy, and the ophiasis area (where my hair loss began) is holding out. My doctor is having me try topical steroid cream now but is willing to try the pulsing or oral minoxidil. One step at a time I guess...
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This is from 12/2017. There was nothing,
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