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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 Ahmed on
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I think experiencing hair shedding while taking Xeljanz is normal because Xeljanz is helping your body to restore normal hair growth, and hair shedding is part of that normal process. Even if you shed from 50-150 hairs each day it's still considered normal. What matters most I think is hair continuing to regrow even while shedding. I'm on my second month of Xeljanz and I got to admit the hair shedding is much much less than before..I used to shed about 40 hairs each day, not that much but my body never seemed to regrow those hairs back. My Alopecia developed very slowly over years, not months. So for me, it's not about excessive shedding, it's about not being able to regrow hair even after minimal hair shedding. But I never expected the shedding to stop even with Xeljanz. I'm just expecting Xeljanz to help in reducing the shedding and restoring normal hair regrowth. That's just my personal experience I'm sure others here have different opinions about this. :)
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Hi, I've caught several colds while on Xeljanz and it takes longer to recover.
I'm also experiencing a bit of shedding after I started my 13th bottle of Xeljanz. But it did not shed at all before. I had no hair prior to taking it, so I think it's the normal hair cycle happening around now. Not really worried since it's not a lot. My eyebrows are getting really good! I had cortisone injection on my last visit and it seemed to help a lot! Eyelashes still breaking and not filling much. A few patches still on the scalp, but nothing big. Will ask for more cortisone injections next month when I go back.
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13th bottle?? are u super well off or something? Xeljanz is extremely expensive, I understand. Or did I miss FDA approval (yeah, right)??
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Permalink Reply by Xeljanzmiracle on
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Kat21, she probably meant she's starting her 13th bottle (i.e.
13th MONTH on Xeljanz) if she took 2 pills a day. Also, she could be getting her Xeljanz free, as many of us are, thru Pfizer's Hardship Program. Why are u being so negative and critical?
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Kat I have no idea what you mean! Yes this is my 13th month on Xeljanz. Thanks Xeljanzmiracle for the response! My insurance covers Xeljanz, sorry if you can't get it.
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Ur welcome Xeljanz2015. What kind of insurance do u have that covers Xeljanz? I bet a lot of folks want to know and will try to switch over if they can.
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Xeljanzmiracle I have United Healthcare/Oxford, but if it was up to them they wouldn't cover it.
I wasn't easy and it took a few months in between the process. I had to appeal and also do the external review.
It's almost time to file again, since they only gave me 1 year at the time. Prior to that I was using the copay card, and that's what I'll use again in case the insurance gives trouble for a few months during the renewal.
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Permalink Reply by Jcortez05 on
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I also have them and they denied me as well ... Then I just applied for financial assistance program and was accepted .. But prior to having Oxford I had emblem/GHI and they approved me with no issue
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Hi , Im experiencing the same thing with shedding ....after all the regrowth i feel like i lost almost half with shedding , not spots yet but my eyebrows are thinning again too ....how long is the shedding lasting for you? Did you try the prednisone pulse?
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I shaved it bc some areas were so thin .. But it's still growing in I will know more in a few months when it gets longer I just shaved it under 3 weeks ago no I ha met tried prednisone and probably won't
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Maree does Dr.King know you experence shedding? Does he have anyting to say about that? Thanks
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