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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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Hi Majda, I’m also from the uk and get my tablets from beacon. Inbox me and I will tell you exactly how to obtain then.
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Hi singh. I also live in the uk and I’m having troubles obtaining from beacon . Any ideas please ?
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Hi Singh, really kind of you to help me! I sent you a friend request so we can pm. Thanks again!
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Hi everyone, i know i’ve been posting a lot lately but i just don’t know who else to ask. I’ve been on the trial drug for about 6 and a half months and i have a lot of growth but some spots have almost none at all and o have seen virtually no activity. I’m not sure if it’ll stay this way forever or if they will fill in with time? it just seems odd i still have spots when a lot of my head is covered in mature hair. i will post pictures to show what i mean.
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Wow cassidymain . If that’s only 6 months growth from an AU base then you are well on your way to full recovery . Just hang in there and believe in more growth in the very near future . I guess you don’t know what dose you are on but at least once you are off the trial ( knowing that it works for you ) you could just buy the generic and continue so you won’t lose your gains ! Good luck , I wouldn’t worry if I was you !
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Thank you Meedo! I’m really happy with where i’ve gotten and i know even if the spots don’t completelt disappear my hair will soon enough be long enough to hide them a bit, but i’m so ready to stop struggling with it! I’ll just try to be confident that it’ll come back. And that i’ll be able to continue medication after the study!
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Hi Cassidymain
My son has alopecia and takes Xeljanz, 5mg twice a day. He has responded fully. When he initially begun treatment and had good enough growth to notice the weaker areas his were in the exact same locations as yours.
His physician told him those same areas are the last to grow back for whatever reason I don't recall. And over time those areas did grow back. I am so excited that you are on a trial I am assuming is for the treatment of alopecia and you're responding so well! It gives hope to me that there will be a drug specifically for alopecia without the worries of side effects of the other drugs. But for now I am grateful for those other drugs, specifically Xeljanz.
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Hi Christophers_mom! That’s so comforting to hear, i hate feeling alone in this. I also feel like the spots i shed the most are the areas around my hairline/temples that already don’t have much hair to begin with! I can’t figure out why that would happen. How long did it take for those spots to fill in on your son? It feels like it’s taking forever for anything to start in those spots for me, along with the unusual shedding. Trying to stay positive and not to stress!
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I feel like it took awhile for those areas to fill in but I honestly don't know because what I really noticed was that my son had eyebrows, eyelashes and hair on his head! YAY!
I understand an alopecian's focus on their weak areas and bald spots but I don't think the general population notices them at all.
Stay positive and don't stress. You're growing hair! Enjoy life.
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Thank you christopher’s mom!! you sound like a great mother and support system. I’m definitely trying to stay positive and i’m sooo happy with the growth i have, but i’m seeing such rapid hair loss in that one spot and it continues to get bigger. I’m really scared and let down. I contacted my study director and will go in for an unscheduled visit to evaluate. I just wish i knew why it was happening :(
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Hey Cassidymain. Wow, good for you - 6 months in from AU to your current pics is an incredible response - I'd say it'll keep getting better for you with patience.
You could always talk to the physician on your trial and perhaps connect them up with your derm and perhaps they may think that giving steroid shots to those patches might help things along?
I'm only 7 weeks into the drug myself, but my derm also insists on Viviscal - have you started taking that? Might be worth talking to your derm and physician about that too...
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