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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 Football fan on
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Hi serinaadele I was on 2 pills a day since the end of April and didn't see any changes.Upped my dose to 3 pills a day 2 weeks a ago.So far I am seeing some hair on my legs and very light vellum hair on my arms.My left eyebrow filled in a little and my right might be starting not one new hair on my head even where I got shots last month I have all my eyelashes probably because I use latisse.Oh and a new pimple on my face every few days that just sits there and doesn't go away(never got pimples till now)lucky me.I have days where I get really discouraged too but I'm not going to give up yet.
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I get steroid injections some times in the eyebrows and a few weeks later I notice whispers of hairs in the eyebrow area. I then shaved them and they grew back thicker and terminal. I get the injections every 3-4 months, because the hairs do drop out again after 2.5 months.
I'm getting more facial hair (albeit white hairs) and hoping they will turn terminal since increasing my Xeljanz dosage. Dr. King wants me to up the dose to 4 tabs a day and use Minxoidil to help speed up the process on the scalp area. Just wish my eyelashes would start to grow and my eyebrows got thick on their own rather than with the injections.
Finally does anyone know the name of Dr. King medical assistant (Hispanic woman with the glasses)? I've tried contacting Dr. King and his admin assistant Pam but no response. Not sure if its a problem my end, so I'd thought I'd send an email to his assistant to see if she can get Dr. King to contact me as I'm due to see him in November for my check up. Any help will be appreciated.
So pleased to hear the good news stories :o)
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I believe her name is Rana. Quick update for everyone. My daughter just passed 10 weeks on Xeljanz at 2 pills a day. 100% regrowth and eyebrows are back at 100% as well. We still have some areas that need to fill in but all hair is in regrowth mode. I believe she will be able to do her pixie cut by Thanksgiving! Prayers to all-
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She is 16...doing amazing on Xeljanz
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That's awesome news! I hope your daughter gets all her hair back, I'm sure she will! It's great to hear that it's working so well for her. I'm 16 too, I hope xeljanz works just as well for me when I start. What dosage does your daughter take everyday?
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Sp06...it's extremely important to be under the care of Doctor experienced in Xeljanz. We traveled across the country to see Dr. King. He is a leading visionary in treatment for Alopecia and monitors his patients via blood tests/follow up appointments. You don't want to self-treat or use treatment that works for others on yourself. Each person is different. So your first step is to get an appointment with Doctor who understands Xeljanz. Based on where you live..I'm sure there are folks on this discussion thread who can assist/refer physicians. Good luck and keep us all updated.
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My current dermatologist said she has used xeljanz on one of her patients before, but I'm not sure how much experience she has on the drug. Does anyone know of a doctor with experience using xeljanz in the Dallas/fort worth area?
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What alopecia did your daughter have before starting xeljanz? And are you's going on a maintenance dose now once all is back fully? I heard xeljanz is going generic in 2019 which means it's going to be affordable. Or would you switch to baricirinib once that's approved as I hear that is safer and will mean staying on it long term will be safer..
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That's great news! I wish Xeljanz was around when I had Alopecia as a teenager.
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So happy for your daughter. How much is the cost of the medication monthly and how often do you see the doctor?
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Thanks for all the input from you guys, I really appreciate it, I definitely want to start xeljanz soon. I might try to keep a gluten free diet cuz it couldn't hurt, but at this point I think xeljanz is the best way to go. Good luck to all of you! I will keep you updated as soon as I start xeljanz.
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