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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 Patchesforlife on
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some positivity all! I was thinking I am glad we have advances in medical indusrty. At least we have option to treat our condition. Imagine living 20 to 30 years earlier thete wud be no choice.
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That's so true! I think our generation will be the first that may see a cure or at least an effective treatment that can be used widely and be affordable. We are also in an era where people don't accuse us of being witches or cursed or something equally horrendous. People can be mean, but still, generally, it's better I think. Thanks for reminding us Patchesforlife- sometimes we forget that things are actually looking up for Alopecians!
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LOL what a Xeljanz newbie I am doing all this posting. Just looking at some of the research which suggested slow responders could do better with steriod pulses. I'm in month four now and the results seem a bit meh, like velus blonde hairs, some eyelash stubble, white fluff here and there. Some days I wonder if I am responding or if I'm not. Any experiences with adding pulse steroids? I am the first of my immunologists patients doing x and thus I kindof am printing up research for him and we are approaching this as a bit of trial and error. Any feedback you guys can offer would be gratefully recieved!
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how many mgs do you take daily? would he consider increasing your dosage?
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15 mgs, gonna ask about upping to 20 mgs but fiscally the steroid surge maybe more practical then upping beyond 20 mgs... the paper I read seems to suggest if you're taking your time in responding then a couple surges can encourage the initiation of the response- then weaning off the steroids (which seems not to result in regression/relapse when Xeljanz is continued as the solo therapy after that)...
Steriod pulses, I think, means massive IV one off dosages of steroids. It'll probably be exy but possibly cheaper then going up beyond 20mgs... this btw, is very much conjecture on my part so please, if anyone is reading this, research this personally and talk it through with the docs before trying. I'm not a doc but just curious if anyone has gone this route... again I'm very new to Xeljanz so I am seeking all the info I can get on those who have gone before me...
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Permalink Reply by Rascalx2 on
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I increased dose to 20mg started to have growth, shot in ass of steroids really helped increase growth. I was AU and have full head of hair.. not as thick as it used to be on top but not bare skin!
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Hello friends.If the hair comes back completely with Xeljanz treatment,Will it be necessary to constantly use xeljanz ? When the threatment stops,do I lose my hair ?
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Does this treatment cause serious damage to the body in the long run ? I have been using dpcp for 8 months and my hair mostly regrowht.But eyebrow,eyeleash and beard did not grow.I think I should stop the Dpcp and start this treatment.
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Good question. I learned that Concert pharmaceutical is doing clinical trial for safer and more effective JAK inhibitor
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It would make sense to stop treatment the Dpcp and start the xeljanz ? I am afraid of side effects because I am going to use it all my life.When will new drug sales begin ?
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it is ruxolitinib no big diffence.
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