Alopecia World
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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 KJ on
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question to all experts with xeljanz after recovering hair, have experience hair lose again?
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Update: 1 year
So, I can't believe it's been about 1 year since I started Xeljanz
My insurance has been paying and Walgreens Specialty pharmacy delivers it like overnight!
I have full regrowth on my scalp.
Full regrowth on eyebrows
95% regrowth on my eyelashes.
For the last month and half, I have reduced my dosage to 1 pill a day (in the morning) 5mg.
I haven't noticed any change and my shedding is pretty much nothing. Maybe like 5-10 hairs a day which is normal. Very light and usually in the shower.
No side effects. In fact, I was exercising a lot of dieting (keto diet), I'm actually at my lowest weight. That will definitely change after the holidays, hahaha.
Photos are attached. I am so busy I didn't make a before and after collage this time. If you want to see how my hair was last year, just look at some of my older update posts.
Good luck to you all!
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Really nice progress :-). Good luck to all really!
What is your insurance btw? also, who is your doctor?
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Thanks! It's surreal that I have my hair back. However, I def know this could all go away at any time. I'm just thankful for *right now*. I'm also glad I reduced the medicine. I didn't like the idea of taking an immunosuppressant to begin with.
My insurance is Horizon Blue Cross and I see Dr. Bordone.
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Great photos and thanks for sharing! Hope that once a day dose will work.
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Permalink Reply by DragonandFox on
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My dr is Dr Bordone!!!!!!! She’s at Columbia U! She really wanted me to be in the trial but I can’t be because of how bad my flair ups are and I was going to have to be off the meds for too long before starting the trial meds also, I have a stomach issue and many anti inflammatory set off the reactive stomach acids causing severe ulcers.
Recently she told me they are close to having a new treatment for me to try. The Tacrolimus has not been successful for me and I’m having terrible skin atrophy from 4 years using Clobetasol.
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I see Dr bordone as well. We're fighting with the insurances to get me on xeljanz now. Love that there are a few people on here that see her.
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Wow wow wow - what lovely regrowth! Fantastic- it looks so thick and your brows and lashes look amazing! How long were you AU before you commenced treatment? I think I'm a slow respnder. Will be doing some steroid pulsing in the next week or so to get things cracking. Might also try doing paleo to help calm my autoimmune system a bit (without cheating....) but hope to see some stronger growth soon! Thanks so much for sharing- gives us xeljanz newbies hope!!!(4 months, 1 month at 20 mgs) ... it's slow but I seem to be seeing subtle changes here and there)..
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Hi Frida,
Sorry for the late response. I was travelling for Thanksgiving.I'm not AU but AA.
I started with Alopecia on my beard about 9 years ago. Then it progressed to scalp. Then it got really intense last November (instead of circles of hair loss I had like a large wide strip). I like Paleo/Keto diet because I love meat. Steaks, burgers, fish, etc. So, for me, it's not a diet per se, it's just eating foods I like. I miss fruit though. I'm on a mini vacation now and have been eating fruit. It's SO sweet and sugary which really makes you wonder if we are supposed eat that much of it (but I'm enjoying it). Keep it up and hopefully you will realize one morning that it worked! I'll keep my fingers crossed!
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is fruits not supposed to be good for alopecia? will youe doctor stop xeljanz once u gained your hair?
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Everyone will tell you this diet or this for is good or bad for you. I mean, whatever works for you works for you.
I think logically, any doctor would stop once it's done it's job to see if it's needed.
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I also recently found about https://www.patientslikeme.com that is a platform that is trying to shift the information to be patient driven and less doctors/pharmaceuticals dependent
It could be a platform in which we can help other people with AA.
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