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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 Frrankie on
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Four 5 MG split 12 hours apart. Just started Xeljanz xr 2 pills split.
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Good to hear! I just started it about a week ago. Waiting on something that might not meet expectation is hard. Wish I had this opportunity 30 years ago. Very greatfull.
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Please keep us posted on your progress, I too would be very disappointed with those results. How's your diet? I'm wondering if the steroid shots along with minoxidil are needed?
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Diet, not doing a diet. This is also with triamcinolone acitone and minoxidol daily. I am not unhappy
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Keep going Frankkie! I think it'll take time but you'll get better coverage soon! I think patience is the main issue with xeljanz.
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Keep going Frankkie! My docs said slow responders often get great results but it takes ages to get off the ground! Carlie I'm not sure if you are talking bout my results or Frankkies? Personally I'm somewhat happy with my results- before I had nothing and now I have fuzz covering all my head (and my lashes and brows who btw someone were very long and thick the other day - almost shed. Tears after knowing my journey) with some patches slowly turning brown! It's a long road- even for normal growth it can take a couple of years to get solid thick healthy hair after losing condition etc.
its like when my babies were born - they had no hair- it took them til they were two to really get thick coverage- before that they had thin fuzz which slowly thickened. I think when you start from scratch it's similar.
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Frida, your results are wonderful and yes, to just get my eyebrows and lashes back would be wonderful. I was referring to Frankie's pictures from after 9 mos. I would expect to see fine hairs cropping up all over my head. But if the insurance is covering it I would stay on it for years if that's what it takes to see results. I am taking LDN, numerous supplements and gluten free, low sugar and dairy free diet. I did see the best results while I was on Kenalog but felt that was only a bandage and not for long term use.
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Thanks Carlie, it's a long slow road but so encouraging when you get to certain milestones ( like being a fuzz top vs a shiny top). In one study it took a participant to 8 months at increasing doses to see the start of growth- but the participant at the end of 18 months had gotten 80% back. So it is often a game of waiting it out, which when you're shelling out big bucks and feeling anxious and depressed is hard. I think even the thought of the future being "hairy" is enough for some people to give them hope on the journey. I laugh at myself cause sometimes I find myself looking at the hair on my arms and smiling - I never even noticed I had hair on arms before this- now I am in love with these little blonde hair springing out from my skin. Alopecia can totally change perspective LOL!
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I just thought I better clarify- I am my doctors first xeljanz patients- the comments re slow responders were in relation to him interpreting statistical data I presented from the journal articles I peruse and make him translate into non medical jargon. From what he interpreted from the charts many slow responders had good success over a longer time period.
just wanted to clarify I'm not telling fibs- I am my immunologists first xeljanz baby! I make him interpret the Medical studies to me so I can understand them.
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Permalink Reply by Rascalx2 on
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Frankie, i was on 15 mgs xeljanz for year and got next to nithing, I went up 20 mgs and got shot in butt from derm , it definatley helped amp up some activity and growth , i just got my second hair cut last week, and have to shave face weekly... i like hving stuble .. I was AU and was sure I was the one that was non responder. It was a long time. And feels forever, but it started to come back
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