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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 Frida Rupert on
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Oh that's so disappointing- I would definitely stockpile in case you want to try again in the future. I think the blood results are a really important guide. If my blood results started coming back negative then I would definitely reassess taking it. But maybe in awhile you'll feel a bit stronger physically and want to try again, or they might develop another med that works and suits you better.
I have thyroid issues too - hyper hashimotos- but at this point don't have to take meds and it tends to flare and then go away.
Right now the fuzz is nice. It's a hard road waiting to see if you are a responder- so I am grateful for how far I've gotten. I hope you get natural remission- that would be the best!
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Thanks Suzie! It's always so encouraging to see everyone's progress and journey!
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Permalink Reply by DJ88 on
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Have any of you gotten full or decent regrowth on just the standard ( 5mg?) dosage? Seems like everybody is using way more then when this first started.
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Permalink Reply by Lindzzej on
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I’m on 5 mg a day, used to be 10 (5 mg twice a day) and I’ve gotten a lot of growth and additionally, my hair is staying stable. No shedding.
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Almost a year, only side effect really is fatigue and then weight gain. Labs all come back normal.
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I've gained about 10 lbs in a month :( but I won't lie. I've been snacking way more. My appetite has gone up and my will to refuse bad foods have gone way down.
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Same Newjack! Think the xeljanz increases appetite which if you don't control (harder to do on xeljanz) then weight gain happens. I'm much more hungry on it and have gained about 10-15 pounds on it and I've never had a struggle with weight gain really before.
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