Alopecia World
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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 Merry on
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Football Fan,
Yes, as soon as I increased my dosage, I started seeing results. My medicine is sent by Express Scripts but they only send out one month at a time of my xeljanz. My blood work has been great.
I hope that my bald spots fill in too, Xmirace!
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Hi merry I have been AU For about 8 months I am seeing facial hair growth on two pills a day. I think I should stick to the 2 pulls a day being my doctor told me it takes 4 months to work into youre system. How long were you takeing the normal dose before switching to 4 I might consider 3 pills a day if I don't see results on my scalp in 4 months thanks
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Hello everyone, Has anyone tried Platelet rich plasma treatment and if so how are your results? I am considering it.
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Hello, I am new to the site "technically" but have been a creeper for quite a long time:) I am 33 and diagnosed AA since age 16. I also have a 2 year old son who has been AU since 6 months old. I have spent the last 17 years getting steroid injection both in my head and muscles in a desperate attempt to "hang on" to my hair. I currently am going through a vicious hair loss episode and those horrible feelings of fear of the unknown,worthlessness and isolation are back in full force. The thought of shaving off it all off has crossed my mind...but I'm just not there yet mentally and emotionally.
I began following all the Xeljanz trials when it first hit the news in 2013. I see so many people on here with such great success that this thread (stalking since last year haha) gives me such hope for me and my son. Can anyone tell me how they went about "convincing" their derm or doctor to prescribe this to them off label? There has been such great information about the prescription card and programs to get the medication. How did you get your doc to prescribe it? Does it seem that more are becoming more open minded to do so now? Any advice would be so appreciated and helpful!!!!
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Permalink Reply by Xeljanzmiracle on
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Where do you live SarahEn? Maybe someone on the thread can recommend a dermatologist to you.
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I really don't think it right for someone that is getting Xeljanz for free to sell pills for thousands of dollars. That will ruin it for everyone should Pfizer find out what's going on. There is a member that has done that.
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I know someone who WAS going to sell their extra Xeljanz for less than half price but the buyer flaked out after making an offer. If anyone else is interested, pm me.
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The person that I know has extra pills because the pharmacy sent overlapping shipments. Also, the pharmacy doesn't divide up the bottle of 60 pills when someone's doseage is increased. So since they had an extra bottle(s) they decided they would HELP a fellow alopecian who would normally pay over $3,000 a month. So they initially offerred it at less than half price for $1500. Recently, however, they lowered the price to $800 for a one month supply, which is a QUARTER of U.S. prices. They did this not only to help someone who would soon run out, but also to save them from the nervousness and cost of flying to Turkey to purchase it. Doesn't sound like greed to me, lol! At any rate, they now have 2 extra bottles available at best offer. If anyone is interested, pm me ASAP. They are going on vacation soon.
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You have to understand that 1500 is still a lot of money and when xeljanz first came out it was 2000 so u only lowered it a quarter. You should know how desperate people are to get their hair growing again. It's like these pharmaceutical companies are not bothered about the physiological affects us alopecians go through everyday but rather they just care about profit.
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Real bad idea selling prescription drugs in a public forum and or facilitating sales or acting like a middle man. Pretty sure you can't spend that money or get your own x in jail... Not to mention if someone has advers reactions to the drug you will be liable ...
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Thanks gcobb. Good points. I certainly don't want to risk going to jail just because I was trying to help others.
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