Alopecia World
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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 sadele on
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It depends on the person. To my understanding, for those who don't respond well to xeljanz have a better success rate of responding to ruxolitinib.
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Permalink Reply by Kathy on
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Thanks. I can't believe how many Terms I've gone to and never once been told about these products. Are they just experimental or can anyone try it now?
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They're considered experimental, but for the most part it works. I'm on it 5 weeks and have a lot of growth. It's all very slow and I have white hair coming in but it's coming in. I'll be posting more pictures at the end of the week I'll be at 6 weeks this Friday.
Jak inhibitors is the best treatment right now for alopecia.
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Kathy,
It took me over a year to finally see a doctor that knows about Jaks inhibitors. I have seen my primary care, a dermatologist, functional medicine doctor, and an endocrinologist. It was my dermatologist that referred the dermatology department at UCSF after I asked him to about xeljanz It was like a light was turned on, they knew about all of the trials and what worked. She even talked about Dr. King, that was when I knew I had the real deal. My functional doctor is very open to prescribing the safer meds, like LDN which may or may not help but is not harmful. She is always sending me ideas and even gave me a bottle of Nutrol to try. Like I said in a previous reply, keep asking and don't give up. Good luck!
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Since I have tried every combination of taking xeljanz and it is not working maybe I should stop for awhile and start up again.How long should I stop for?Or just wait for a Jak 1and2.And should I slowly stop taking the xeljanz or just stop?Anyone have any ideas?
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For those who are receiving their xeljanz through xelsource hardship assistance program, did it matter what the diagnosis was? My preauth was denied and so was my written appeal, and the written appeal says strictly because of alopecia.
Xelsource wants proof of the denial letter but I'm scared they will also deny me based on that.
Anyone have any idea what I should expect and how I should handle this.
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My doctor said matter a factly that I would get the first 3 months free from Pfizer and then we would have to work on the insurance to cover it after that. But she, also mentioned that there is a hardship program if you can't get insurance coverage. That's all I know so far.
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