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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 mastros on
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there are two phases when my hair look like that. when they re-grow :-) or when the spots begin to happen :-(
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Me too, these spots just occurred about 2-4 weeks ago they're quite slow growing, I pull on the edges and nothing ever falls out. I think that is a good sign?
I am getting injections tomorrow and hopefully will increase my medication back to 16mg/15mg
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Wow. I did not know that was an option, what is the advantage to doing that. I will be starting xeljanz very soon and I’m curious about dosing options
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It looks like 10mg of Xeljanz is not quite enough for AU. Some people take 3 pills x 5 mg = 15mg. I have Xeljanz XR, so I take 1 pill 11mg and 1pill of Xeljanz 5mg.
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Hey guys -
Quick update from me: I’m now almost 4 months on Xeljanz and 2 months at 20mg a day. Haven’t had a single hair of regrowth. Somewhat surprised because my doctors have said I’m an ideal candidate (no family history of alopecia, started medication less than a year from my first outbreak). Have kind of just accepted my fate at this point. Obviously this drug works for the majority of people, but it’s also obvious that there is 20-30% of the population that this doesn’t work for. I’ll continue to take the medication for now (Beacon is just so cheap lol), but I haven’t seen anyone respond after months of non-responding at a high dose. Also, for what it’s worth, Dr. King doesn’t really support steroid pulsing anymore (he thinks results tend to be temporary). He prefers prescribing oral minoxidil instead.
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I think I'm in that percentage also. No family history and xeljanz isn't working for me either. It's very disheartening. I tried cyclosporine and prednisone with no luck. Tons of kenalog shots which worked at first and now nothing. After 3 years of fighting this I'm finally losing the battle and almost all of my hair is gone.
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NYGuy,
I had no response on 10mg and increased to 20mg. It took 3 full months before I began to see growth, so hang in there. You might still see results. Good luck.
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I’d like to ask those of you on Xeljanz, what else do your pulsing? Ferritin, allergies, vitamin deficiency?
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