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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 Chubs on
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My son did for many years and it worked - at age 8 took 150mg once a month then every 8 weeks until he was 18 - then it stopped working - he is now on xejianx and it is working great - 3 months in tons of growth
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I wanted to pass along these 2 updates. 1st..Pfizer has released the below statement indicating that the FDA is considering a once a day pill (slow release) for Xeljanz. 11 mg just once a day. That would eliminate the hassle of trying to track the twice a day routine. Hopefully this will start Jan/Feb of 2016
http://seekingalpha.com/pr/13998715-pfizer-announces-fda-acceptance...
2nd- Someone on this post listed the below website out of Canada that is selling Xeljanz for $1,848 for 60 pills vs the same exact version in the US. We are private paying for our daughter as she is under 18 and doesn't qualify for the co-pay card. It might not be as cheap as Turkey...but a lot better then buying it in the US.
http://secure.adv-care.com/cgi-bin/ncommerce3/ExecMacro/new_frame/n...
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Thank you for this info. I by no means am doubting it but sometime told me to be wary of these Canadian pharmacies as they were getting their sons medication from there for another autoimmune disease and it turned out the medication was fake. Is your daughter seeing good results?
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She just started...day 3
We are heading back to Dr Kings in mid August for a check up.
So far so good..she did mention a slight headache
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Permalink Reply by Xeljanzmiracle on
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That Pfizer press release Seahawks Dad mentioned is SO EXCITING! Not only would we take the 11 mg pill only ONCE A DAY (I always worry I will forget a dose) but we will take an EXTRA 1 mg a day, which gets us closer to 15 mg. The other exciting part is that Pfizer mentions the IMMUNE RELATEDNESS of rheumatology, DERMATOLOGY and gasterontology. Pfizer knows that Xeljanz is working in ALL THREE AREAS and WANTS more clinical research done. I know in my case I had to fill out an authorization form granting my doctor permission to give Pfizer my medical records of my response to XelJanz. This is one of the reasons Pfizer is giving the drug away FREE. They are collecting the research for future FDA approval of Xeljanz for autoimmune related Alopecia and other autoimmune disorders. IT'S GOOD NEWS FOR ALL OF US!!!
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FDA might be slow, bureaucratic but they severe a purpose in protecting the public. It is ignorant and uneducated for anyone to suggest skipping or shortening clinical trials. After Thalidomide deformities clinical trials were required and lengthened. Example of success is Accutane was found during Clinical trials to cause miscarriages. Btw the Avg cost is 100 Million dollars for clinical trial, that's if everything goes correctly. It can reach the 1 billion mark if the FDA requires a larger study.
FDA also protects us from unscrupulous drug manufactures snake oil, whose medications do nothing. Ex: airborne, magnetic necklaces, Acai berry juice, alkaline water etc...
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Just had my 3 month checkup no growth (was in the falling out stage so probably have to stabilize before I start growing back hair)at all yet but going to remain positive.Going to have to start paying out of pocket have a ton of discount coupons going to try them at several pharmacies and see what works will keep everyone informed. Still no new news from any of the trials it's been nearly a year.What the heck is going on!!
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I just had a 6 week check up with my dr in Chicago. I have growth or fuzzies as I like to call them. Eyebrows are all back, I only initially had partial loss there. I'm totalis, but I see improvement. Xeljanz is being completely covered for me by blue cross blue shield ppo. However, I've tried many treatments before this. So, they approved me for one year and then we will reassess. Feeling hopeful!!!!
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I will start posting pics when the fuzzies turn brown. A little easier to see that way. But my baseline pic would just be a bald head. :D. I'm thinking I'll start seeing something very noticeable in a month.
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