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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 Djp on
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Curious how any of you, not on a clinical trial, are getting these drugs since they are not FDA approved?
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For those who used xeljanz coupon 12k for the year, are you allowed to use it before your preauth goes through?
My doctor said the pre-authorization is taking a long time and to use the coupon in the mean time but CVS specialty says I can't and can only use it after pre auth. I thought I could use it before pre auth and cover up to 3 months. Please any help would be appreciated.
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If you are thinking of the Xeljanz Co-Pay Savings Card you can use it while awaiting pre-authorization. CVS inputting the order incorrectly. I experienced the same problem.
What they are doing is processing the order as if you are an insured patient.If they do that it goes to the insurance company who declines it.
They need to process it as if you are uninsured.Because as of now you are uninsured.
Presto! it works. You can read the instructions on the back of the card.
Other benefits of the card is that you may see progress after the three months and will help you with the appeal you will most likely face.
My son was denied initially, but after the dr took photos of progress they approved it.
Let us know of your progress and good luck.
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I just called CVS and said to try it uninsured and it didn't work. Called xelsource and they said it doesn't work for uninsured (if you have insurance and get denied). Not sure if anything changed or if they caught on but it doesn't work.
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I just used mine successfully this month.
Does the back of your card provide pharmacist instructions?
When mine worked, I just told the specialty pharmacy to bypass my insurance company and submit the claim directly under the BIN number on the back. And it worked.
But I don't think we're doing anything wrong for them to "catch on" to.
I think Pfizer is offering $12,000/year to anyone who needs it for their medicine.
I would try another pharmacy.
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Does anyone live in the Dallas or OKC area and know of a dermatologist who has experience with AA and perhaps prescribes Xeljanz? Thanks!!
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Any responders to 10mg per day? I have about 60% hair growth but hair fall has started again.. :(
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it means Xeljanz is not final solution for AU. again hair fall is main problem.
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did you stop taking xeljanz?
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I heard that low dose Naltrexone is really good for normalizing autoimmune diseases. I found website https://www.buyldn.com that sells ldn with no preacribtion needed. I have no idea whether its a scam. Do we need a prescription for ldn? please let me know your thoughts if you had any experience with it
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I've ordered twice. First lot came through fine, the second lot I'm waiting on but I ordered right before Xmas so I'm not expecting it yet to be honest. It came via Israel, seems to work ( no miracles but I feel fine and alongside xeljanz my hair ***seems**** to be growing faster (this is only my own opinion btw could be placebo) and came with a script signed by a pharmacist saying the low dose meant nonprescription necessary. I found it through an affiliate site which was all about LDN and had a far bit of information via academic type literature on it and it was listed as one of list of trusted vendors ( others being actual doctors who prescribe it). Good luck Patches!
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