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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 Carlie on
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Hi Vanessa,
That picture was after I did the prednisone pulse. I had nothing before that after 5 months of xeljanz, 10 mg a day. I started the 20 (16.5) of the Beacon Xeljanz around the same time as the pulsing. I had traveled to Mexico to buy the pfizer xeljanz for the prior 5 months. I saw an almost immediate response to the pulse.
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Do you fear once the prednisone wears off you may lose hair or do you think xeljanz will sustain the growth?
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Permalink Reply by Vanessa on
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I think Carlie said the prednisone was only administered for 3 months - it would have worn off long ago I think? It sounds like the prednisone can jump start growth.
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Wow Carlie, your hair grew so fast in December 2018! This is encouraging. I may also increase my dose to 20mg (or 16.5, whatever the case with Beacon may be) though my doctor is advising to proceed with caution... (because of the blood clot concern). Thanks for sharing your experience - very helpful and hopeful for a partial responder like myself :)
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My doctor has recently advised me of the blood clot concerns too. I only did the pulsing for 3 months and yes that's what jump started my growth. My doctor, also told me that the study regarding the blood clot showed up in a very small percent of patients with RA . there have not been any studies on the Alopecia groups. RA patients tend to have many other problems as well. Just saying, it's more of a disclosure or warning, like hair spray being flammable. Maybe not a good analogy, but you get the idea.
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and also if your taking beacon pills your most likely not taking the full 20 mg
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Carlie thanks for all your pictures and imput. How quickly after started prednisone do you start to see results. I’ve been on Xeljanz for almost 3 months and i saw your post so i went to my dermatologist and he prescribed me 180mg total to take over 2 weeks.
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guys i have been on predisone from India , started 60mg/per week and now i am on 30mg/per week. i have seen a lot for vellus hair grow. my scalp is full of it. of course i take tofacinix 15mg per day too. Trust me i have seen huge progress . Personally i feel like the steroids are helping me but the main question is that will the vellus hair turn to terminal hair. that only time will tell but i can confirm predisone can work. For me i followed what Nat did and started predisone seeing progress. if anyone needs any sort of help i am there for them, please feel free to ask me anything
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Congratulations Ricky.. how long you started prednisone now? When did u start seeing hair after prednisone and what’s your tofacinix dose ?
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hey i started predisone before 4 weeks and last week i started seeing tremendous progress. Like i look at that mirror everyday . my only wish is that the vellus hair turns into terminal hair. keeping my fingers crossed . i am on 15mg tofacinix per day ,
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That’s awesome man. I’m very happy for you and I’m sure soon the hair will turn to terminal . Do when did you start tofacinix ? And how long you plan to stay on steroids for ?
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i started tofacinix on 5th of October so its been around 7 weeks now. i plan to reduce predisone to 10mg after two weeks. then i will stop it for 3 weeks and then start again from 60mg 1 week protocol. (every week i will reduce it ) .
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