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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 Rascalx2 on
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I have the same story as you.. i was taking xeljanz 11 mg a day for a year with zero results. I went upto 16 mgs with no results, then went to 20 mgs and was seeing fuzz come in, my derm gave me kenalog shot in hip and it gave the xeljanz a boost... i have full head of hair and eyebrows not as thick on head as it used to be. When i drop down to 15 mgs it starts getting bald spots and shedding, just went to derm yesterday for kenalog shot, it helps to stabilize from falling out but i dont know how much longer i can contiue to do this... i feel as though i will eventually lose this fight. Xeljanz seems to be losing its effectiveness. It progresses so fast when it starts to shed.... the back of my head has some bald spots and those have white hirs looks punkrock and the top and front are pretty good...all i want to keep is my face and brows.. im a male and was starting to accept this alopecia when briws started coming in w xeljanz... to me , the head is a plus... at least i try to have that attitude..... i am taking a drug to contiue to have hair .. to people who dont have alopecia probably cant understand that and it sounds ridiculous but when you go through what we have gone through i am willing to try anything...
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Permalink Reply by Anna on
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Thanks for your reply Rascalx2 -and yes, no one can quite understand what we go through, which is why this forum is so important. It's a devastating disease and yet our health remains unaffected. It's so difficult to understand for others.
I too would do anything. I literally have not a single hair on my body - no fuzz no nothing - and I am at 30 mgs. Based on everyone's replies here, and am definitely going to do the Kenalog injection, but I do worry terribly that I am done for. I will be 50 in September, and I have spent my life until a year ago actually KNOWN for my brows and lashes and insanely thick curly hair - I don't recognize myself anymore. I KNOW I am more than my hair of course - it scares me that I can't remem]ber what I looked like before. It's a grief like a bereavement.
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Hi Anna! I am also not recognizing myself at all. For the last two years I am avoiding mirrors. On Xeljanz only for a bit over two weeks but extremely anxious to see the results. Every morning I try to find some improvements.
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Hi JG - I hope that you have success with Xeljanz! I have not, and it breaks my heart, but I do so wish that others succeed.
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Anna, I have read a lot of posts from this discussion. For many people not responding to Xeljanz helped stopping it for few month and restarting. After restarting they were responders. Maybe you need to do a break and restart with 10mg dosage. That is my plan if nothing is happening in the next five months.
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Yes I have noticed that as well. I think my doctor will double my dose to 60 mgs at my next appt, for about a month, and then perhaps that will be my next course of action if that high dose does nothing.
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Anna,
There is hope stick it out with xeljanz and try mixing it up.with something to help it get started.
Try steriod cream and pills (pulsing) and injections. I am.a firm believer once xeljanz gets going it's a matter of time before you get too 100%
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You'll get there. This drug works. Attitude is everything as well! I can't wait to come back in 6-8 months and hear your progress story
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Anna I know how difficult it is, i remeber when I was out and about trying to just live in the day trying do do “as usual” but all i could think about was how i so badly wanted to look like who i was... it felt like a struggle jto do anything... some people are great but some suck! Was hard to see people who couldnt hide their shock when they saw me. I am pulling for you!! Try and sty in the day... i remeber thinking my hair was not coming back.,, and cant believe it did.. but i remeber all to well the agony of being AU.. believe that I believe
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