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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 Newjack on
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Thanks everyone for the support. I really would be in a dark place if it were not for this site and all of you.
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Thank you Carly- that’s very kind- this site is the reason I feel like me again - without it I wouldn’t have the info I needed to get well again. Today is a hard day- we have an appointment with our vet to send our 18 year old border collie over the rainbow (I have two other dogs but I got her when she was two when I finished university and find it hard to imagine “adult” life without her) but logging on here and seeing the success of everyone and knowing that no matter how hard it is, feeling stronger mentally and recovered from this condition I am able to face this situation with a clearer mind is so very helpful.
I am hopeful to find solutions for non- responders. If anyone has info on new treatment options, emerging medical solutions etc please make sure you shout out on here- there are some who don’t respond to xeljanz and we need to keep the search going.
I’m probably going on a trip to Asia in the next year and plan on doing some research on stem cell therapy while abroad... it may lead to nothing, and perhaps I won’t be able to track down anything as I am only going for a short time- but any info I get I will post.
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Hello everyone, do you have the exact internet address to order xeljanz in Bangladesh please? And the payment procedure. Thank you in advance.
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I’ve been on Xeljanz since December 4th.15mg per day. My hair and head still tingle and burn and Ive lost more hair. I’ve lost maybe 30 percent total in patches since August. When did the inflammation stop for everyone? I know that hair lost now couldn’t be prevented since it’s ibky been a month but I didn’t think I’d still have the burning feeling.
thanks everyone and happy New Years!
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Brock, It took about 5 months before I started to see new growth but I lost all of my hair in a matter of weeks. I've been taking xeljanz about 9 months and my hair is about an inch long on top. My scalp was really tender at first, my hair is growing in heavier with a big cowlick in back. and the tenderness is going away. I would try pulsing steroids to stop the inflammation and kick start the xeljanz. I take 20mg a day, I didn't see results until I pulsed the steroids and increased my dose. Good luck to you!
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Thanks for the response Carlie. I just figured my scalp would stop being tender once I started Xeljanz but that didn’t happen. Thanks for the reassurance and hopefully the shedding will stop soon and the regrowth can start. May be giving my head it’s first clean shave soon... yikes!!!
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Hi Carlie,
How are you pulsing steroids? What is your system?
I am starting Prednisone for 3 days and then Tofacitinib.
Thank you
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I did prednisone pulsing 3 days for 3 months and then Xeljanz 20MG a day and still no results. I am thinking I might be a non-responder.
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what dosage of prednisone? I am doing 80 mg for 3 days a month. How long have you been taking Xeljanz?
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Oh no, 80 isn't enough. I did 300 once a month for 3 months. I was on Xeljanz for 5 months at 10 mg a day and increased to 20 when I did the pulsing. I buy from Beacon and another source in India. My Dr. followed Dr. King's protocol. She's a specialist for Alopecia, had it when she was a teenager.
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Have you checked to make sure you don't have scarring Alopecia? Stick with it, it took me 5 months to see any results.
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