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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 Starshine how are you doing.I had all kinds of blood tests when I was first diagnosed that ruled every thing out.Went to Dermatologist here that deals with alopecia.I live in Los Angeles so seeing Dr King would mean a 3,000 mile plane trip!
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Permalink Reply by sadele on
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Hi Football Fan, I'm experiencing a very similar result. I was on 2 a day for 2 months and have been on 4 a day for almost 2 months. So close to 4 months on Xeljanz and not much happening. I have a very small, about the size of a tennis ball, of white hairs that are very thinly spread and it hasn't done much more than that. Uggg.. I've only been AU since January 2015 so I was praying this would work because it doesn't seem like that long compared to many others. I was AT prior for 6 months but it all grew back. I've exhausted every other treatment and always think about the "what if's" with chaging diet, vitamins, exercise, ect...
I also did all the blood test and I'm incredibly healthy, per the Doctors opinions. Not sure what to do either...
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It took a year for most of my hair to fall out.Theni used dncb for a year (worse experience of my life)Finally gave up and decided to just go the permanent wig route(you keep it on 24 7 and about once a month you have it taken off and put back on(you can shower and wash your hair like a normal person)Stopped stressing so much and the third month I went in and shocker my hair started growing back!For 2 years my hair grew about 60 to 70 percent not quite enough to go without a wig then bam started falling out again last summer.So when I started xeljanz I was in a falling out stage.Thats all I can think of why it's taking longer.Like you we know the switch can be turned off and we can regrow our hair.Thats what's so frustrating! Keep me posted on your progress.
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Hi starshine, how long have you been on zeljanz and how are your results?
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Just remember there continues to be more and more research being done to combat this condition. It's autoimmune and thus there will likely never be a maintenance med that works for 100% of everyone. Continue the meds as long as you can and evaluate from there. More stuff will be coming, I know it sucks but this is an exciting time for break troughs on this disease.
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Ive read that the rest phase of the natural hair cycle is around three months, so i wouldnt be surprised if you dont start growing hair immediately within about three months of treatment depending on where you were in the cycle before you started treatment, im not too sure though. Has your hair at least stopped falling out? Thats an indication that it might be working. You should stay on it for a while longer and see if things start to go better. I really hope you see results soon. As for me, i just booked an appointment with Dr.King and im scheduled to see him early November. Im very excited to meet dr.king and hopefully start treatment with xeljanz. From what i hear from you guys, dr.king seems like a great doctor so i cant wait even though the trip is far and expensive. Im not completely AU yet either just like you when you started, and ive had this disease for well over two years now, and im starting to see hairloss everywhere. Im trying to stay positive and am hoping that xeljanz will work wonders for me. Best of luck to you.
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Hi Marisa, I have been on Zeljanz for a total of 8 months, 6 months on 2 a day and the last three on 3 a day. My hair growth started very slow, but has improved a great deal since upping to 3 a day. I have about 90 percent regrowth and just starting to see larger areas of dark hair coming in. Still mostly white though, but really starting to fill in and get longer. My results are not as great as others has been, but it is getting there slowly. I have been AU for less than a year and AA for 3 years before that. Are you on Zeljanz?
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Thats great news..no im not on medication but have a little boy who is 4 yrs old that is au. We were contacted by dr. Kings office but will be seing his associate brittney craiglow for a consultation. She is the pediatric dr. Best of luck to you!
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It is strange but it seems as though those of us who have not had this condition for a long time are the ones who are responding slower.
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There's still hope for me I started the end of April I'm about 2 months behind you. Weird but my legs are getting vellum hair so hopefully somethings happening.I never had to shave my legs above the knees now I don't think I will ever shave again!Leg hair was the first to go now that's the only area responding.
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Definitely don't give up. Any hair is a good sign, and yes, my growth only really kicked in in the last three months. Leg hair is usually more resistant, so that is good. I still don't have all body hair back and what I do have is snow white, including brows and lashes. I feel like an albino.
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Starshine did Pfizer approve the 3 pills a day and if they did how did you get it covered
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