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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 singh on
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Can anyone let me know when do they think is a good time frame to up the dose on xeljanz ? As I feel 10mg will not do much for me.
Is 20 mg a safe dose to start off with?
Thank you for any advice
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Permalink Reply by DJ88 on
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Does anyone here know where I can get some really good/realistic black eyebrow wigs until I am able to get Xeljanz?
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No but a friend who lost her eyebrows had a tattoo like technique that created hairlike lines to feather the shape. She was very happy
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Permalink Reply by Rascalx2 on
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Dj88, so i got eyebrows on line , cant remeber the brand, they were so ridiculous ! I was desperate and my wife got them for me. I know they were not cheap ..So i went to a eyebrow place and she put hem on me , i couldnt help but laugh, they look like groucho marx costume brows.. anyway, think they could work if you can find someone who is a professinal make up artist.. even better to find some who works on sets for movies. I ended up chucking them, after shiwing my wife and having a laugh, i was most effected with alopecia frim losing brows, but they came back w xeljanz. I personally would not do the tattoo micro blading, im a guy and i think they look to drag queen for me, girls look pretty goid but i was so afraid if i got it, i was stuck with it, its a tattoo. And w no hair , there is no hiding that. Wish you best, i ll try and find thename.. if they were right color and trimmed right , they cohld have worked!
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I've been AU for over 2 years. I started xeljanz at 10 mg a day for 6 months and not a single hair. I increased my dose to 20 mg a day and did 3 months of a prednisone pulse. 300 mg of prednisone once a month for 3 months.My bloodwork is all good. Here are some pictures of me 3 months after increasing and pulsing.
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Yay!!! So happy Carlie- your well on the road to recovery! Super happy!!!
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So happy for you carlie, it came in the same for me ..pure white. The great thing when it starts coming back for me is it gave me relief that there is a solution in a hopeless situation.. and the joy! I remeber looking in the mirror and becoming emotional over the fact that i was starting to look like me again, i recognized the guy looking back at me and i was so happy to see my old friend
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Permalink Reply by NicoleT on
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same same same! brought me to tears! and mine started white too. then i saw the first brown hair then 2 then 3 yahooooooooo so grateful for this drug! looking forward to future pics Carlie!
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