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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 ariel015 on
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Hi Nat and Fingers_Crossed, thank you for your replies! @Fingers_Crossed did you experience any noticeable shedding or new patches after going off for that long? I haven't ever stopped taking xeljanz even for a day since I started it and am JUST getting to a place of regrowth... my doc didn't say anything about stopping before but wanted me to stop for a week after
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Permalink Reply by Fingers_Crossed on
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I did not notice any shedding with stopping for the vaccine but I did have COVID in January and I had to stop tofa for a week and I developed 2-3 spots. They are growing back now.
My docs reasoning for stoping a couple days prior to the vaccine is because it takes 1-2 days for tofacitinib to leave your system. And the vaccine is more effective if your immune system is not suppressed.
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I stopped for only about 2 days (1 before and 1 after) J&J.
I am only on 10mg a day though.
I have not noticed any side effects other than some fatigue for 2 days from the J&J vaccine and it has been about 5 weeks. I haven't had any additional hair shedding either any least nothing noticeable.
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Is it possible by taking Xeljanz for quite some time that after stopping it or decreasing the dosage the alopecia would be worse possibly venegence mode? thank you
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My dr has told me anecdotally that stopping Xeljanz and after additional hair loss it seems to take longer for his patients to see regrowth if they start back up again. It's still effective but it seems to take even longer than initially for them to respond. This is a small anecdotal sample from him.
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thank you. Its good that it continue to work though. Does your doctor know when will Xeljanz be approved or any medication?
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The recommendation from doctors is to taper to lower dosages very slowly, so you can find the balance for your body.
I have reduced my dosage from 10mg Xeljanz 2x per day to 2 days a week to take 10mg in the morning and 5 mg in the night successfully, and the next step has been to cut one more pill essentially per week and do this 3 days per week.
Till now things are fine, I havent triggered AA to kick in.
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thank you;.
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Hi! I just wanted to add to this pt because I went from 20mg xeljanz a day(10mg in morning and 10mg at night) to 20 mg one day then the next 15mg on and off (10mg in morning, 5mg at night). This happened late March and early April I got vaccinated (Pfizer), so there are some confounding variables but I developed 2+ new fairly large patches in the last month. Not sure if it was going down too fast, going down at all, the vaccine, or other stress related things but I just wanted to say if I were someone considering reducing my dose I would have followed @mastros advice and went down slower than I did.
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hi everyone. Which JAK inhibitor works for alopecia? JAK 1 or JAK 3? thanks
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Hello everyone!
I live in the USA and Ive been in an alopecia study for two and a half years but it’s coming to a close for me by the end of this year. I’ve gotten mostly full regrowth and i couldn’t be happier! They have told me they can’t promise me any medication once the study is over and i think i may have to purchase xeljanz on my own. Can anyone walk me through how to go about that? How much does it cost monthly to get xeljanz this way? I would hate to lose all my hair after the study is over as it took so long to grow back. If anyone has any information please let me know! Thanks
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