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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 Brock on
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Frida - thank you for the kind words of encouragement. It’s important to try and stay positive during everything... even if it can be hard. My AA started about 6 years ago with a small spot that I was able to get injections and regrowth. I had few more show up but nothing like what I have right now. Have probably 20 to 25 percent hair loss now but most has come in the last week. I appreciate your response and I’m hopefully the medicine will help!
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Hi Brock, I might add that for most with AA the hair usually grows back without any help from medications. I would probably try steroids first for immediate results. The steroids will stop the inflammation and the attack of the follicles. Hopefully you will be able to pinpoint the trigger and fix that part of it before the full blown assault.
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it is a really rough time- I found the shedding the worst time- it’s that dread of feeling the hairs EVERYWHERE! The unknown aspect.... the constant fight or flight going on for your mind and body. Once it’s gone- it’s still very hard but it’s almost like you loose the flight response and the fight response kicks in- for me that was a tiny tiny bit easier. It helps knowing there is something accessible out there that works and then kindof allowing yourself to try and relax just a tad and wait for it to kick (this is not easy I know). I agree with Carlie- if you have a sympathetic doctor - a steriod treatment might slow/halt the shed until you can assess how bad it’s going to be and get your hands on some xeljanz. Remember this community is here for you too- with out this forum I would have never made it through!
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Thanks NicoleT, I’m loving your contribution to this thread too! It’s such a dark place at the start of alopecia - and having a positive and encouraging voice on here is quite soothing (I remember when I just started the meds). :)
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Permalink Reply by NicoleT on
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Amen!
Love and grateful to all of you guys.
I was in the most hopeless place and literally on my knees before all of this path unfolded to me with the help of all of you.
I never would have found the affordable version of this drug without you guys and there's no way I could have afforded this therapy which has given me my life back.
Thanks to all of you for sharing all of your information and experiences.
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Hi friends! Update my process, 10 months on Xeliganz 3 months ago went up to 15 mg and some cortisone shot, I had no hair at all for 10 years and coming so thin and slow, I don’t know how long more it takes to get more hair, ordered from Beacon and received today I’m gonna take 4-5 of them I live in Canada and my order shipped to USA and I got from there. Hopefully works good for me as i can’t order from Xeljanz Turkey anymore cause so expensive. Anyone has similar situation as me really appreciated to write me your experience. Good luck all
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edit your post and add them through the image icon on the bar (above the font size).it seems the upload files option is broken.
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It’s generic version of xeliganz and very cheaper price. 30 of them in a box $15
Nicole is the person who used it first and I started a week ago
based on people who checked on lab it’s similar to xeliganz.
Yes you can order from USA and comes to your door with no problem!
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