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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 Newjack on
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I see doctor bordone and will see her in about 2 weeks. I can ask her staff for you.
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Thank you, it would be great! Do you need to book appointments well in advance?
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Hi Katie.
I’ve been referred to a Dermatologist in London and there’s a dermatologist in Ireland d who treats patients using xeljanz. Might save you going to the US
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- Hi! I'm in the UK at the moment and I've struggled to find a doctor who has practical experience with Xeljanz (it does not help that it's not approved for alopecia by nhs either). Do you mind sharing details of both?
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Hi Kate. How are you getting on ? Did you get sorted with a Dermatologist?
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I have been AA for about 25 years, never lost it completely but lost of most of my facial hair, eyebrows and eyelashes prior to starting this med in Feb 2019. Has anyone else notice that their growth has plateaued after being on tofacitinib for some time?
I've been on since Feb 2019 and grew back most of my eyebrows and facial hair but it isn't as full or thick as it once was. Scalp has improved but still thin in several areas. I was on 4 pills a day (beacon generic) but went down to 3 pills a day 2 months ago. Havent seen much change or improvement in the last 2-3 months which is why i decided to taper down the dose.
Is it unrealistic for me to expect it to grow all the way back? I'm grateful for having been able to grow the facial hair, eyebrows and eyelashes which were previously non existent but i'm wondering if I should continue to taper down or stick to 3 or 4 pills a day.
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When did you first start to see regrowth?
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Hey guys i know i’ve been posting a lot but things have just gotten really bad for me, i’ve been in this trial and over the course of a month but mostly the last two weeks i’ve lost basically all of the hair on my head. I haven’t stopped the medicine. My dermatologist thinks it’s the birth control i was on because the timeline matches up and he says the immune system is fragile to hormones but i’m feeling so hopeless because i’ve neevr heard of someone losing all their hair while still taking the medication. And now i have to hope it grows back when i have no reason to think it will. I grew basically all of my hair back it was 1-2 inches long all around. has anyone lost this much while still taking the medicine? and if so has it grown back? feeling so discouraged.
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