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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 Katrina on
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Update- 27 year old female. Exactly 2 years of Alopecia (rapidly progressed to AU within 9 weeks) and no prior history before this. Been on Xeljanz 21 months, mostly at 20mg/day. Growth was great until this past January when I thinned out on the left side of my head and back of my head- possibly due to a sensitivity to a dry shampo. Hair seems to be coming back. I’ve done cortisone injections in these areas every few weeks. Hair still seems to be shedding (roughly 75 hairs every shampoo- shampooing every other day).
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You have gorgeous hair, was it always that thick? So you went from AU to that much hair in 2 years? I'm so hopeful now. I've been on Xeljanz for 7 weeks, I have most of my eyebrows and eyelashes coming in and a fine layer of vellus hairs on my head. I just received a denial from my insurance company so I am planning a trip to Mexico City, I'm in California. My UCSF doctor is appealing for me but I don't want to be set back if I can't get it so the trip is in the works.
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Yes, I was completely AU at around November 2016, it’s been growing since.
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Katrina I am so glad everything is still going well for you. Your hair is so thick and getting so long!
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Unfortunately my patches started getting bigger and more were appearing. I did start xeljanz again I just finished my first bottle. Have to figure out my next steps. I had three bottles leftover from last time that hadn’t expired. Not sure how I will be getting xeljanz this time, last time I qualified for the hardship program but I was single and had a lower income I won’t qualify now. Have to hope my doctor can argue with insurance and make a case for it this time. Does your insurance cover it for you?
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Nice hearing from you Katiegirl. I hope you get your xeljanz through insurance !
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Katrina you have no idea how happy this makes me! I've been thinking of you often during the relapse- and hoping against hope that the xeljanz would hold for you and let the cortisone injections work! This has made my day! Hair looks amazing and regrowth coming in strong!
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Thank you so much for these kind words. 3>. It was a tough thing to go through... harder than the first time I lost my hair. It just means so much more to me now.
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Permalink Reply by Rascalx2 on
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I feel it would be harder emotionally to lose hair after having it again, im thin on top and can see my scalp , before i went AU i had thick hair there was never any sign of even receding , not bad on sides but i have a couple dime sized spot s in back showing up again. If i rub back there and give little grab , ill have hairs in my hand. I just dont want to lose brows and lashes... gonna make an appointment for kenalog injections they definitely help stop shedding..... it is such a pain in the ass to take meds just to keep hair !!! WTF??
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Permalink Reply by AnakinWildstar69 on
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Ever hear of epigenetics and/or CRISPR-Cas9 gene editing/modification? I'm thinking this method will eventually get to the 'root' of the problem and simply program the genetic disposition to be switched off permanently, and whallah, the gene expression is OFF-hair returns as it always was, without the worry?!? I'm doing some research into this method. Looks very promising.
Anakin Wildstar
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