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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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Replies to This Discussion
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Permalink Reply by Megn on
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Hi all, I had a visit with my derm today. She said the growth is great, but suggested adding a burst of oral prednisone and or kenalog injections. (I have done both of those before and they worked, but I am AU and it's not the right path for me) so is there a difference in doing them now that I am on Xeljanz for the past 18 weeks.??? I wasn't going to add anything to my regime besides Rogaine, I wanted to see the results of only the Xeljanz, but maybe ther is an advantage to doing it now?
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I have sporadic translucent growth all over about one in long, brows are vellus and some terminal too, almost a full upper lash on one side and a lot of sporadic body hair, arm, leg, ect... I will take a picture in the sunshine tomorrow morning. I know it's working, but it's slow. I didn't have expectations, so I am just going along with it.
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Permalink Reply by rjayeh on
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I am a new member, and this is my first post.regarding the xeljanz: what is is the diffrence between this treatment and the steriod pills!! Both are not cure but just an temporary treatment!!
And xeljanz side effects are more dangerous, so why you are considering xeljanz as best treatment option untill now? Please clarify.
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this is what I wanna ask too,if the hair lose again(stop using Xeljanz) then there is no difference to steriod pills.
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Doctors use tofacintib or xeljanz in cream form on a 17 year old girl with alopecia areata on her hair and eyebrows and they all grew back after 12 weeks.
http://medicalxpress.com/news/2015-12-doctors-teen-girl-alopecia-ar...
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https://www.naaf.org/news-room/hot-off-the-press-another-treatment-...
Oh this can be another treatment for alopecia !! Exciting times! Hopefully until stem cell treatment comes out !
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Probably better just to wait for a topical tofacitinib cream. The drug in the link is known as Stelara and its an injection u get regulary, with side effects. A tofacitinib cream will probably hv little to no side effects. Im on my fifth day of xeljanz right now. How long did it take you guys for hair to stop falling out? I know that seeing actual growth will take a couple of months.
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Dr. King had told me he looks to see noticeable results by the end of month three. If your AA is active, there's a good chance you'll continue to lose hair over the first 2-3 months as those follicles were probably already tagged. If you're not seeing anything by end of month three, consider upping dosage. Even after upping dosage some people won't respond to xeljanz (believe his observation is about 25% of people won't respond at all, 25% will respond only after higher dosage). He expects results of his study to be published end of this month and report to be published shortly thereafter.
I'm about 9 weeks in - definitely have seen some regrowth (facial hair), definitely have seen some loss (half of bottom left eyelash).
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