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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 dreamscometrue on
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My medicaid only covers Enbrel and Humira, but not Xeljanz
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Permalink Reply by Jcortez05 on
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It absolutely does work .. I used Walmart specialty pharmacy then cvs specialty pharmacy and just said I don't have insurance just my xeljanz copay card from Pfizer
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So as long as your Doctor Rx it you can get it through the program?
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Yep if your insurance doesn't cover it then say you don't have insurance and use your copay card for it
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Permalink Reply by cmdd20 on
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Since the co-pay card is for $12k (and not necessarily for a set number of refills), I shopped around to see where I was able to buy Xeljanz cheapest. It turns out that some of the online pharmacies sometimes sell it a good deal cheaper than the CVSs, Walgreens, etc. I'm pretty skeptical about buying medication online so I made sure the pharmacies I used were legit, I think there's a certification called VIPP that ensures authenticity. None of the online pharmacies I used accepted the co-pay card directly, but Xelsource will reimburse you for out of pocket expenses if you provide the receipt (at least it used to be that way, not sure if they still do that - there was a form on their website that you needed to complete and mail it in). Only issue I ever had with that is they take their time to reimburse you, so if liquidity is a concern, I wouldn't recommend this approach.
If you do search for online pharmacies, you'll no doubt come across some Canadian online pharmacies. I've never used these for two reasons: 1) I was never able to find a way to verify authenticity and 2) the Xelsource terms and conditions for the co-pay card make clear that they'll only reimburse for US pharmacies.
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Thanks for the info, but I can tell you I highly doubt I'll use an online pharmacy, as the risk are too great, quality can't be assured, and if anything goes wrong where do I go to sue or who would be accountable if something happens while I take a drug of unknown quality?
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They reimbursed me $6,000. Fairly quickly last year.
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That's pretty standard. The co-pay card is supposed to pay for 3 refills.
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What did you do after your refills were done? How did you get more?
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Hi Christopher's Mom
I'm on 2 pills a day.
I also get cortisone shots every 3 weeks
Finasteride daily
biotin 10,000 daily
Rogaine 2x per day (but really 1x per day because I usually am too lazy to do 2x)
I hear I might pay up front for a while until insurance is sorted. That's what the other person who got it approved from my doctor had to do. I'm hoping I get approved quickly.
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Thank you.
I'll ask my son's Derm if adding Rogaine would be a good idea...I think it is.
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Been on Xeljanz for about a year now with minimal results. I was hoping this would be my cure but it isn't looking like it will be. My derm told me that the results from the studies aren't that good. While I know this has helped a few people here, please be aware that Xeljanz is just another one of those treatments that seems to only help a very small amount of patients. Thanks OP for giving hope and knowledge to all of these people.
Lets hope for an actual cure for alopecia soon!
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