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 Xeljanzmiracle on
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Sultan h, almost everyone started regrowing their hair on 2 pills a day. A couple of people had to increase their dose to 3 or 4 a day before seeing regrowth, but most people saw regrowth on 2 a day.
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Permalink Reply by James 2me on
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Hi Xelljanz miracle. What length of time do you feel you should start to see scalp hair takeing the 2 pills a day. I am at about 9 weeks and seeing facial hair but nothing on the scalp so far thanks and have a nice weekend
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James, if you are seeing ANY type of regrowth then Xeljanz is working for you. Just be patient.
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Kris,
I have taken cyclosporine three different times. It grew my hair each time, but I always had to stop taking it a few months in because it effected my kidneys. I didn't get any response unless I took a dose so high that it effected my kidneys. My doctor tried starting me on a low dose and increasing it, and she also tried starting high and lowering the dose. But I low doses don't work for me and high doses raise my creatine levels. I hope you have better luck. With a high dose (200 mgs. I think) my hair started to grow in about 6 weeks. It fell out almost immediately when I stopped or decreased the dosage.
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Thanks Merry have tried 200 mg everyday for 3 mths but no response. Maybe time to look at other meds available in canada that aren't really expensive.
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You know the fda is really bullshit with their rules In cases like this and it really pisses me off.
So I've been suffering for 30 years with au and there are Fda approved drugs with a safety profile, with documented trials on these drugs and we have to go through new trials to get it approved for alopecia? That makes no damn sense. Doctors can prescribe this off label and that's fine ? But the fda won't just approve the shit so my and our insurances can pay for it ?? This is such bullshit. And the amount of money the fda wants just to start a trial is even more bullshit. That's what taxes are for!!! To fund these damn programs.
Think I have the motivation to fire up some letters to my local politicians
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Permalink Reply by Lindzzej on
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Agree with you 100% gcobb...cannot express how frustrated and sad I am.
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Lindzzej, sorry but I noticed you asked me a question about the Hardship Program and I just saw it this morning. Pfizer uses their own pharmacy called Sonexus. They Fed Ex the Xeljanx to you for free also. Don't stay frustrated, get your free Xeljanz and get your hair back girl! Also Lindzzej, with the Co-pay card and your prescription you can get $12,000 worth of free Xeljanz IMMEDIATELY this calendar year. Start with that while you wait for the Hardship Program to be approved.
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Xeljanzmiracle, do you simply take your prescription and the copay card with you to a physical pharmacy and they just fill it for free? The couple of times I attempted to go forth w the copay card they always wanted to bill my primary insurance first even though I knew for a fact that my ins would deny me.
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Permalink Reply by Jcortez05 on
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Lindzzej , at first I never mentioned having insurance I just said I did t have any so it wouldnt prolong it .. Just apply for card online . Have your dr call I. The script to a specialty pharmacy .. I've used both Walmart specialty and cvs specialty and that's it . When the specialty pharmacy calls you you jut te them you have copay card and give them the numbers they will ask you for from it .they next overnight it
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Permalink Reply by Jen on
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Also direct your anger at Pfizer who developed Xeljanz in a public/private partnership with the NIH (National Institute of Health). Public funds were used to develop this drug and Pfizer can now charge whatever they want for it.
"In 1994, Pfizer was approached by the NIH to form a public-private partnership in order to evaluate and bring to market experimental compounds based on this research. Pfizer initially declined the partnership but agreed in 1996, after the elimination of an NIH policy dictating that the market price of a product resulting from such a partnership would need to be commensurate with the investment of public taxpayer revenue and the "health and safety needs of the public." https://en.wikipedia.org/wiki/Tofacitinib
Does anyone else get the feeling that these Co-pay cards will be issued to do free research on willing participants (at no legal cost to Pfizer)?
I also get the feeling that even if you don't get cancer/TB, that at some point the freebies will go away and you'll have to shell out a big mortgage payment per month to keep any hair you've regained.
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