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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 Juan on
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Since I started Xeljanz 6 weeks ago Ive drinked at least 18 times (3 times a week) and some of those times have been heavy drinks.. it has not affected me in any way...
I dont know if this helps but is my experience, I am not advising you to drink like me but I dont think a few drinks would hurt at all
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Hi Everyone,
I'm here to report on my 19 y/o son's progress. He was diagnosed with AU on September 2016 and began taking Xeljanz 5mg, twice daily on February 2017. By August 2017 he had full hair regrowth.His physicians are now weaning him off the medicine as follows:
1, 5mg pill daily for a month.
Then 1 pill every other day the next month with physician follow up at the end of the month.
He is anxious about losing his hair during this time but will be closely monitored by me and his doctor.
I will let you all know how he does. Fingers crossed.
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Everything crossed for him! Totally understand the anxiety re dropping dose. Best of luck and what a great mum!
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That is wonderful news for your son. So glad he has had full regrowth. When I stopped xeljanz I did keep my hair for quite some time. It did eventually start to shed again but I just restarted xeljanz a few months ago and now I take it as needed. I don’t think it’s possible to ever be off the medicine fully but I am happy to not have to take it everyday. Hope it is the same for your son
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Hey Katie girl how are you ? Long time no speak. I hope you are good and your hair growth is still coming along good.
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Hi Singh. Yes I’m sorry I haven’t been active on here too much. My hair is still going strong. I did begin to lose it again I had about 7 patches and decided to restart xeljanz. I have been on it again for about five months but I take it sporadically every few days and it seems to be working. How is everything with you?
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Thank you so much for your input.
How long did you maintain your hair before it began shedding again? And how long do you stay on Xeljanz when you need to?
Thank you.
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I stopped taking xeljanz in June 2016 and was off of it completely until this year around April I believe. I was pregnant and breastfeeding during that time though so my case is a bit different my doctor believes my hormones had a lot to do with keeping my hair. This is my first time taking xeljanz again but I take it sporadically maybe every other day or every two days and I am keeping all my hair. I do believe that xeljanz can put you into a temporary remission which is promising as I don’t like to take the medicine everyday.
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