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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 Arun B on
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Hey, I've recently (3 months ago) lost a majority of my body hair due to the diagnosis of Alopecia. As soon as I went to my dermatologist I was told to get my hands on Xeljanz. However I have read about another JAK inhibitor called ruxoltinib:
"Two FDA-approved JAK inhibitors tested separately by the researchers—ruxolitinib and tofacitinib—were able to block these immune pathways and stop the attack on the hair follicles."
http://www.livescience.com/47408-alopecia-areata-ruxolitinib-hair-r...
Any feedback on this alternate JAK inhibitor?
Anyways, it may be to early for me to jump on a medication but I can get it. However, the cost is tremendous.
Thanks for posting your thread!
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Permalink Reply by Lindzzej on
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Hi Arun, Ive done a ton of research on both of these drugs and the Ruxolitinib is used for a certain cancer (also JAK Inhibitor for Alopecia) but its my understanding that to pay for that one out of pocket would be awfully more expensive than the Xeljanz though both are highly highly costly...anyway just throwin that out there, im personally fighting to get on the Xeljanz.
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Permalink Reply by blondfrog on
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Good luck bro <3 I am so happy for you they have really come far with http://www.webmd.com/skin-problems-and-treatments/news/20140819/hai... :) they have found another JACK inhibitor and it has worked within 8 months on mice and all three patients they have tested it out on :) keep me up to date please my email is twanaok26@aol.com good luck bro <3.
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Just checking in to see how things are going and if anyone has heard how the study went with Dr King. My son
(12 year old apolecia totalis ) has a 2nd appointment with him in mid April, more or less I guess just for an update on the study that was ending this month or next. I'm enjoying reading everyone's posts here and good luck. The cost of the medication is super scary.
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fenster - how is your son doing? i went to the cap program (childrens alopecia project) meeting this weekend. there were a lot of kids there. i think it's helpful to be around other kids. they said they have programs in 49/50 states.
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Hey there. We did hit one meeting, and although he was withdrawn and a bit shy I believe it will help long term. I'm very excited about the prospects of taking him to California for the annual conference next year. Thank you for asking. Overall he still wears his skully cap 24-7 so no progress as far as owning the disease yet :(
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fenster - wearing the hat is ok. i'm hoping to be at the naaf in california too, hopefully he'll take off his hat and own it while he is there. most of the kids do. btw, it's hard enough just being a 12 year old. good luck
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Permalink Reply by wclawvs on
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Sorry to barge in. Does Dr. King give you any hope for treatments for children? Our daughter is five and lost all her hair. This has been really difficult. It would be wonderful to have some hope.
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Permalink Reply by AlopeciaDestroyedMyLife on
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I have noticed some small black hairs at the front of my scalp there's a quite a few there as well as some longer dark vellus hairs on the left hand side as well as the patch of hair at the back.
I'm really trying not to get my hopes up but this is really the first hair on my head in over a decade. I'm just going to keep ploughing forward and hopefully in the next few months my appearance will change drastically.
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Here are some photos, the shade around my head is a tattoo
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