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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 Frida Rupert on
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Thanks Singh, the shed is so far very minor, just before I noticed absolutely no hairs coming out and now I notice some coming out when I comb. In all honesty, before alopecia I wouldn’t have given it a second thought as it is such a minor shed, but of course now we are all Uber aware of our hair and what it’s doing. I really feel this is just a small shed and with a month or so of steriod pulsing, up to 20mgs and try to chill out and do things to reduce the stress - that it will go away. I know it’s related to some stressful stuff at work and the grieving for my dog, and really it’s a lesson to me about how I need to manage my stress and emotions in a healthy way!
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Apparently Pfizer just changed the rules on their co-pay card that used to cover 3 months. Now you need to have private commercial prescription insurance (not state, medicaid or medicare) otherwise you don't qualify.
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Hi, I have a private insurance and I still couldn't get Xeljanz with a co-pay card.
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Nat, that's terrible. Did they give a reason why the refused to fill your co-pay card?
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My pharmacy said that it's a co-pay card and my insurance had to approve the drug first. Insurance called - they needed preauthorization from my doctor and etc. I gave up and bought generic myself.
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Why not get the preauthorization through your doctor and have it covered by the co-pay card?
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Generic is cheaper, plus I have not seen anyone with Cigna to get it approved.
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That's the way it was last year as well. Pfizer offers a hardship program which is why they don't offer the co-pay card to those without private insurance.
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I got a 3 month supply last Oct on co-pay without insurance involvement at all. Now they want your private insurance to approve it first. Pharmacist said Pfizer just changed the rules a few weeks ago making it more difficult for a lot of people. Apparently their hardship program is also supposed to be much more difficult to quality now.
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Tried to use the co pay card back in November through CVS specialty pharmacy and after over a month of phones gave up.They refused to fill the order.
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I started 20mg last week.
My spots have stopped moving, but my hair is overall thining out up top .
Today
Day I lowered dose:
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Newjack, I'm sorry you are losing your hair, but I think you have an amazing head of hair that most men without alopecia would love to have.
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