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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 singh on
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Good to see people who have been through this horrible disease to have their hair back.
kind regards
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Permalink Reply by ChrisPowers on
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I've had AU for something like 15 years and have been on 20-25mg Xeljanz for over a year now, and I've yet to achieve cosmetically acceptable results anywhere, although I do have maybe 95% of my mustache hair, maybe 50% on my chin, probably 30% on my eyebrows and I do have eyelashes but they are so short, light and thin as to be, for all intents and purposes, invisible. Also got some more underarm hair and pubic hair, but not enough to appear normal. As for my scalp, virtually nothing. Tiny hairs scattered around and not worth mentioning. They're only visible enough to be a nuisance in that I now must shave from time to time.
Sorry for the bad news; I'm sure it's not what you were hoping to hear.
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I’m sorry your results aren’t better... it’s so hard to go through a year of treatment and not be were you wanted. Some people do go higher then 20 mgs, not that I am advocating that, just stating that some doctors happily prescribe up to 50-60 mgs (I think a girl on her was going up to 50 mgs to get scalp hair thicker). Did you try any co-therapies? I guess there are successes and some disappointing results.
in my case I feel very very grateful I got all of it back... I was aiming for lashes and brows and it gave me more then that. Also read the duration of Alopecia matters- so greater then 10 years the good and very good responses are less. It doesn’t make it any easier to deal with though. I know you are probably over the seeking new treatments stage after xeljanz but I got great results on brows and lashes with careprost/lumigan/lattisse. The active ingredient is same in all - I think careprost is the cheapest- I am on lumigan as that was what was prescribed. It’s not too expensive and it may just get your lashes a bit longer to provide protection to your eyes.
I hate sounding like a cheerleader for xeljanz - I know I do- but that’s from personal experience , and I do believe that results often take a long time so often I advocate trying a bit longer but yes, their are people who don’t get great results and some people can’t tolerate xeljanz. I just have everything crossed that they find something that works in 100% of people soon that’s affordable to all us alopecians. Until then I’m try to share my experience, noting that it may not be the same for others, but hopeful that some of the info is helpful in other cases.
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Hi Frida,
Apologies for the delay in replying, but I don't get updates when people respond to my posts, and I only stumbled upon this old post now.
Thanks for the kind words and for the suggestions. The reason I've stayed away from Latisse is because it was shown to affect eye color, permanently darkening the iris, and quite frankly I'm happy with my eye color the way it is. Looks good with my hair color (if I remember correctly).
As for higher dosing, I do intend to go up, and am in the process of trying to get enough Xeljanz to do so for a period of at least six months or so. When I do, I'll report back on this board with my results. My intention at the moment is to double my dose frmo 12.5 mg twice per day to 25 mg twice per day for a total of 50 mg per day. Although, if people are going as high as 60 mg, maybe I'll consider doing the same, at least temporarily.
Thanks,
Chris
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Hi James- glad to hear you are giving it another go. Are you covered by insurance? Interesting about lumigan- I have very light eyes - pic attached- I used lumigan for a few months back in my twenties before Alopecia after a bad experience with lash extensions left my lashes a bit sparse and have been on it now for longer then a year. I haven’t noticed a change in the colour. I don’t know if that’s just me or it’s something that happens over a longer period. I actually also like my eye colour so hoping I avoid this- maybe use to encourage growth and then taper off once regrowth happens. The pic is when I had about 60% of my lashes back- they are longer now and thicker. This is the best photo depicting eye colour. As you see it quite light and is consistent with pre lumigan eye colour. Thanks for updating us- everything crossed for this round!
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Yep, definitely don't wanna mess around with those eyes.
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Apparently, it only happens in a small percentage of cases, and even then it might be more likely to turn light brown eyes darker brown.
That said, at least for me, it's not a gamble worth taking I also happen to have lighter brown eyes to begin with.
I'd look more deeply into it, though, if you're at all concerned.
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Wow be careful seems like a crazy high dosage.Thats 6 bottles a month! It seems no one who finds the right dosage to grow hair can lower their dosage with out losing hair again.Latisse has less scary side effects than xeljanz I have been using it for years even before Alopecia.Good Luck
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I don't think it would be safe to be on that high of a dose for long. Problem is, what is to stop hair from falling out once dose is lowered.
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Well, I intend to be on it long enough to assess whether it's working or not. I figure that will be about three months. If in three months' time, the rate of growth doesn't appear to be enough to justify the high dosage, I'll discontinue. If it does, I will continue until cosmetically acceptable results are achieved, and then taper down until hair loss is noticed, and reevaluate at that point. Hopefully, I can just use the high dose to kickstart the regrowth, and then a somewhat safer dose for maintenance.
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