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 singh on
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Thank you cws,
Can i ask was you AU? And how many months did it take you to get full regrowth ?
how long have you been on xeljanz ?
how many have you had alopecia ? As I feel although it’s working it’s slow because I have had alopecia for a while now.
I using this as a bridge and hope they bring more safer treatments to market in the next few years and eventually use CRISPR to cure alopecia.
Thank you again Cws for your advice I really appreciate it!
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I feel like crispr will be kept illegal. China has been using it and modified a human incorrectly and has done more harm then good. They're trying to creat super smart humans.
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Hi Newjack,
I think it’s the future of genome editing. Atm it is trial and error but I think in like the next 10+ years it will start coming to surface.
Or some sort of stem cell or genome editing will start treating diseases.
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Yes, I was AU for close to 2 years. It was slow at first. I think I started seeing facial growth around the time you are. The scalp and body hair was starting to show pigment and signs of promise closer to the 6 or 7 month mark. My legs took years to get what they have now. The thing to keep reminding yourself is that if you see hair growing...it's working! Just needs time to take hold.
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Hi CWS. I have also had complete regrowth, going on five years now. How long have you been on one a day? I dropped from three to two and would love to go to one. Please let us know how it goes if you eventually stop completely. It is encouraging to know that you maintained your hair at one.
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Hi Starshine, I have been on one pill a day for about a year now. Overall I have been on the meds for close to 5 years. Right now I am just going though the last of my supply at one pill per day. My dermatologist thinks I am in "remission" and to schedule another appt if I ever see anymore shedding. I would really like to see a JAK topical come out soon. I would be interesting to see if I can control any shedding with that. I get spots in my beard from time to time but they grow back.
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Hey when did you start seeing initial regrowth ? are you still on xeljanz?
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How soon did you start seeing regrowth on your facial hair?
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Hi Frida and everyone,
I need help on a question please..
Ive decided to start steroid pulsing as been on xeljanz for 5 months and have good regrowth on face eyebrows, eyelashes and beard coming in. However my scalp hair hasn’t really took off although I can see loads of white hairs on my head when seen with light.
So I wanted to know how should I steroid pulse? And what steroid to use ?
Should I try predisilone for 1 day a week at a certain dose ? Or another Steriod ?
I only want to use it to get a boost for scalp hair.
Or should I wait for the 6 month marker ?
I am currently taking 20mg a day.
Thank you for any advice on regime or what you all did it would really mean a lot to me if you could please give your advice to me.
Thank you
kind regards
Singh.
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Hi Singh
i did betamethasone (oral) 2 consequetive days a week at 5mgs per day, took me about 3 months to get full coverage on scalp from the commencement of pulsing. Other treatment regimes I’ve heard of is a similar process with dexamethasone 2 consequetive days a week, I think (need to double check) that it was 5 mgs dailybtoo. Betamethasone and dexamethasone are good because they have long lasting anti inflammatory effects. There has been good success with once monthly pulsing of prednisone - I think they do 3 consequetive days at a high dose once a month, usually for 3 months, but I am unsure of dosage amounts. If you have vellus hairs on the scalp I’d hold off another month. Facial hair has a much shorter growth cycle so often results will be faster but you clearly are a responder. If things stop improving then start steriods. Waiting another month will let you see if it thickens up on its own. Happy to read of your success so far!
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Singh, I was frustrated after 5 months and hardly anything. My doctor had me do Dr. King's protocol of pulsing 300mg of prednisone tablets once a month for 3 months. That seemed to really kick start my growth. I'm currently on 20mg a day and so far so good.
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Permalink Reply by Sad_Rapunzel on
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Please write where can I schedule an appointment with Dr.King and what is his number.
Thank you .
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