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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 Jcortez05 on
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I never completely lost my lashes but my brows did grow back. I lost almost all of them and had to get microblading bc of it but pretty quickly they grew back .. in fact I had to get them threaded a few weeks ago , to go with my microbladong
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Permalink Reply by kimberj on
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Update:
Hi Friends! Sorry it has been so long since I've been on here. I will try to get back to everyone's messages. Life has been busy! the last time I commented, I was losing a lot of hair. By summer 2016, I was pretty much bald except for some sparse eyelashes. The entire time I was still taking Xeljanz 5mg x 2 daily and Plaquenil 200mg x 2 daily. (I have been on Xeljanz since October 2014) It was such a huge disappointment :/
Over the past couple of months I have begun growing hair again. Its snow white and thin with straw like texture. Just this month, I've noticed the pigment is returning. My eyebrows are responding more slowly than before. I still keep putting off getting them tattooed.
I have had the typical side effects: weight gain, sinus colds, acne, ect. Recently my labs have been elevated in areas and it is a possibility that I will have to discontinue treatment for a month or two or until my levels return to normal.
I hope everyone is doing well!
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Permalink Reply by Xeljanzmiracle on
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Kimberj, I'm glad ur hair is returning and becoming pigmented. I think ur response would been been better and faster if u could have increased ur doseage to 15 mgs a day.
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Permalink Reply by Blessing on
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I see a few people are taking Plaquenil and Xeljanz. Has the addition of Plaquenil helped growth? And did you gain more weight when adding Plaquenil?
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Hi everyone I too haven't been on for quite awhile. I have been on xeljanz off and on for nearly 20 months also tried the cream for 5 months with no results.Tried every strength combination and even added plaquenil.Had some weight gain 5 to 7lbs watching everything I eat only one cold last month but some sinus congestion (I have seasonal allergies so can't really blame it on xeljanz).I wish there was something else to try I believe not every medication works for everyone the same.Was hoping Baricitinib was going to be approved being a jak 1 and 2 might work a little different and lower the price of xeljanz for everyone.Having a thyroid condition I tried several medications at different strengths before I found the one that worked best for me.It has been 3 years since the trials started and not hearing much news anymore.If anyone hears anything new please share it.Trying not to be discouraged but don't have any hope of something good happening soon.Has anyone had success with anything else when xeljanz didn't work?
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Permalink Reply by Rascalx2 on
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Hey football fan Im sorry to hear you are not having success. I can certainly feel and understand your disappointment. I have been taking xeljanz for 7 months up to 20 mgs and I have nothing. Right now Im staying hopeful but reality starts to creep in and I really feel if this doesnt work there is nothing else for me. Sometimes it feels like false hope. Wish you the best. I do worry about my health down the road, Ive alwaya been healthy.. eat well, physically active. If I didnt have that... that would be worse than having no hair! I looked in the mirror today and thought "fuck! Im gonna look like this the rest of my life?" Peace
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Rascalx, just a few days ago u said that u now have peachfuzz. That's ur hair growing back! That's how it starts. Stay on course, u are on ur way.
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keep an eye on Interleukin 2 low dose. there is a big trial double blinded in France right now with Doctor Passeron. it will last 2 years...
that's another cytokine... am optimistic but it will take time
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My GP recently told me Xeljanz was too 'broad' to be an effective overall treatment for AA. The Jak inhibitors will be an effective treatment but need to be refined to specifically target AA. I was booked to go to Turkey several month ago but cancelled, got smp, and decided to wait. There are jaks in clinical trials now for treatment of AA.
Only a matter of time before there is a drug which everybody responds to, must have hope and be patient :-)
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Thanks for all the encouraging news.Rascalx2 completely understand about the mirror I won't look in it anymore unless my head is covered.
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Many people have responded quite well under xeljanz.
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