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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 Katrina on
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Thank u!! Hoping to be wig free by New Years... how are u?! How's the baby? And your hair?
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You could very well be wig free before than! I had hair extensions placed when my hair was about three inches long. The girl who did hem was amazing but very expensive. If you look around though anything is possible there are so many things out there. Baby is good keeping me busy! My hair is holding up, found another dime sized spot on the right side of scalp but it hasn't gotten bigger. I have also noticed that my right eyebrow has a patch I guess would call it. I'm really trying to push the worry away and hope that it's nothing.
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Hi Katiegirl, have you stopped or reduced Xeljanz since the baby? I have had full regrowth and would like to reduce the dose now. I thought you had also reduced the dose at some point. Congrats on baby!
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Hi star shine. I did completely stop xeljanz in June of 2016 after having full regrowth from AU. I became pregnant shortly after. I have not resumed xeljanz at this point. My doctor wasn't sure if it was the pregnancy that kept my hair or maybe I just went into a remission. If you have full regrowth I would think of reducing dose also - just for health and cost! I never wanted to be on xeljanz but if I had to I'd restart it. And thank you!
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So happy for you kAtiegirl this is how we all hoped xeljanz would work for everyone!Question has anyone used xeljanz and it didn't work Then switched to ruxolitnib or barcitinib and saw results.
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Permalink Reply by Suzie on
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That's awesome Katigirl! It's nice to hear that you can go off of it and still have hair! Congrats on your baby!
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Thank you all, I so wish that something even more promising than xeljanz would be available for everyone who doesn't respond. Isles love nothing more than for this awful disease to have a cure
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Katrina You look amazing! So hoping I respond like you!!!! (only a few weeks in). You look absolutely fantastic.Are you still wearing a wig because you are used to long hair, as your regrowth looks pretty thick. I understand- I've always been a long haired girl until it all fell out -eck. Its gonna be tough once it grows in (if I am lucky enough) being short haired for awhile- but if it grows at all I'll be so so happy. Congrats on your success!
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Awesome news Katrina! It looks amazing! I received tape-in extensions to help with filling in my patches.....now I have advanced to Dream Catchers which are great....no stress at all on your hair. My hair thinned out so much...I'm hoping by Christmas to NOT have to wear anything, but only time will tell. Unfortunately for me, I am also going through menopause (I'm almost 52) and I don't think some of my hair will ever come back.
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Hay, I am kinda excited. If my blood work is good my dosage of xeljanz may increase. Currently on 4 pills a day 2 in morning and 2 at night. Has anyone used more than 4 pills a day for a long time.
I have had considerable response especially after increasing dosage. My nails are much stronger. Facial hair is thicker and I have some eyebrow growth. My head may have stalled but it is also hard to inspect. I will post pictures if progress warrants pictures. Cosmetically not there yet.
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Congrats
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Permalink Reply by Rascalx2 on
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20 mgs? Im on 20mgs and have had pretty good results.. full beard, eyebrows coming in and now hair is atarting to turn darker color(right now all hair is completely white)... wonder if mgs were increased how much would show better results; by the way, I have ulcerative colitis and xeljanz has been considered as a treatment, the starting dose is 20 mgs. It has reallu helped with my colitis. Still not great results w top of head or back of head.. still quite smooth. But I am happy with beard and brows, I dont feel so stark, and not as conscientious.
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