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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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Replies to This Discussion
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Permalink Reply by Return_life on
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Well I did 2 treatments of xeljanz.
First time I followed the product monograph. My only improvement was my nails. Lol. Doctors told me I was a non responder.
But am way too stubborn. Basically I saw some of the best doctors of USA Europe and Canada and they told me i was a non responder.
So wait a minute... the product affects my nails but not my hair... hmmm. And you want me to believe that? Second time I did it my way.
I don't know if we would all be responders with high dose. Not necessarily. It worked on me but I don't have a full hairline. So many questions we don't have the answer. I just think that in 2017 a few options are on the table for someone who want to try things...
I enjoy the supporting community, with more data and more case studies we will have better knowledge. Most doctors I saw honestly don't give a **** about us. So it's really a big personal decision cause nobody is going to force you to try a treatment.
This disease took 10 years of my life. I hate it.
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i want to thank you for always replyimg back and sharing your knowledge and experience. Alot of people disappear after they get their hair back and you never hear from them. I m glad you were stubborn and you got good results.
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I'm just gonna jump in on the love fest- return to life the information you provide us is amazing. I would've been so much more scared without having someone as experienced as you give me advice. I think it's hard to stick around once we grow back our hair because the experience is so traumatic to look back on. But your bravery in continuing to give advice and information to us newbies is really admirable. You don't BS us about the results or the risks but at the same time you give us practical info on what we need to consider. It's funny, I think you are younger then me, but for some reason I see you as a type of elder....
when/if I recover I hope I have the bravery you have shown to continue and face this traumatic condition to help others. Thanks R2L
ps sorry for mush but I don't have an immediate alopecian contact in my life so I find the understanding I get here really touching.
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We are all in this together.
You will respond Frida. There are a few treatments, at least one of them will give you something.
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Sides depend from person to person.
He stopped due to acne. Very severe acne and he was on high dose
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ill be OK with acne. Its cancer Im worried about.
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Hi all,
so I am also one of those responders who stopped and hasn’t had significant hair loss (I have been off it greater than a year). I get a small patch here and there and have since lost my eyelashes and part of my brows again but my scalp is doing fairly well. Xeljanz is still so new and no one knows for sure what will really happen it is all a testing game. I never went higher than 15mg and I would think carefully before going higher there can be serious side effects of this drug although I was lucky to not have many
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Such an encouraging news! How mang pills did you take per day and how long had been on it? Did you gradually taper it off? How quick for you to respond to It? I thought that eye brows and eye lashes are less likely to shed, but I guess that everybody is different. Thanks for sharing!
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congrats katie girl. that is indeed excellent news
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That's fantastic! So happy for you! So good to hear success stories!
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Permalink Reply by Rascalx2 on
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So been on xeljanz for over a year, starged w 10mgs.... nothing, 15 mgs ... nothing, went to 20 mgs started getting white hairs everywhere. Got a steroid shot in upper glute and it came back a little better.. at first had fascial hair then full beard, eyebrows lashes .. was super happy over that,... full head of hair now. I just got a hair cut! Its not as full as it used to be but honestly , I was just hoping to regain eyebrows... so its gray getting darker and darker from pure white... so under bright light you can see scalp but better than hairless all over.. blood work is good, still at 20mgs. Good luck everybody... funny thing is not so much hair on rest of body.. light in legs, arms .. shaved face the other day, pretty damn happy with results and can cry when i see myself in mirror and reflect back on that awful pit in heart when i was AU. I wish you all the best
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Yes! Such a great result. Thanks for sharing.
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