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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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Hey Sultan! Yes am on 2 5mg pills a day I did start back on 3 a day very short while but then realise it's no point as I couldn't continue on 3 a day so went back to 2 a day.
How are you getting on ?
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Singh
like me . I was on 3 pills a day short time around 1 week but I realize it's not fair on my body to continue on 3 and also I'm worried If my body accustomed on 3 , I
m back to 2 pills now . we have time . I'm on 8 weeks now and have fuzzy hairs little bit
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Yeh that's true mate for me if I could go on 3 I would to give it that extra boost. People
Like atlethes have steroids for years and other people are on biologics for years. But yeh I think if it's gonna work too 2 pills might be enough it's just being patient I guess but people have said after 3 months it does get in the blood.
There is a lady on Instagram and she had regrowth after 4 weeks and nearly complete growth on week 12! I guess it's just a time thing.
You got any nose hairs or body hairs yet ?
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Permalink Reply by Jcortez05 on
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Singh she lost it all after she lowered her dosage .. Her IG is thealopeciaexperiment
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I guess that Instagram posting answers the question of what happens when you lower youre Dose wow. That's crazy
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Well you never know .. She grew it all back extremely quickly . I mean like full growth and pretty long in like 4-5 months ..that may be why it fell out so quickly also . Plus she had stressors at that time she also mentioned
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mat e you should stay with the 2 pills a day and see how it goes I am also thinking about asking my Dr about the 3 I asked My R A doctor about rakeing more of a dose and he told me that he would t even think of considering it at this point. I will be at 10 weeks tomorrow
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Hey James, yeh I am mate. A lot of people
Like Susan and others have had regrowth with 2 a day. And yes as a safety point of view it's good having a lower dose. I think even yourself say on 2 a day atleast until the 4th month as I've seen Susan's post that she was on 2 a day and she has full regrowth and she first only seen signs of regrowth at 3.5 months.
But do let me know what your Dr says please. Thank you
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Actually my next persription which starts at the end of this Month will be ths Xelljanz XR which is the once a day 11 MG time release Xelljanz not sure how a higher dose of this one would be taken I will find out and let you know
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Cool James yes do let us know. Can you ask your Dr when she thinks baricitinib will be available in the states ? As I've heard it has been filled for release..
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Permalink Reply by Giusep on
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Hey All, my wife recently went to her see her doctor, he was blown away by her regrowth. My wife has been on 2 Xeljanz a day for a year a 4 months and now moved to 1 a day. I am super excited that she is weening off of the Xeljanz bc we would like to have kids within the next few year, but I am very nervous that it will fall out again. We continue to stay positive and hope for the best.
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That is amazing guisep! So happy for her ! I think it's good tht your wife is going to one pill because she has been on 2 pills for a long time and the cases where people hair have fallen out are when they have had Alopecia for a long time had quick regrowth and decided to stop where i feel you need to still continue it so t-cells get familiar with the drug hence why even when the hair grows continue on that dose which you's have done . So stay positive. And do let us know mate.
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