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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 Christopher's_mom on
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Lindzzej,
We're in the middle of the the appeal process for my son right now. Did yours get approved? On what basis if so? Our insurance company cited a research study showing 75% of adolescents who take Xeljanz have significant hair regrowth within 6 1/2 months based on SALT scores as a reason to DENY it!
Geez...a teenager can have a likelier than not opportunity to have hair and they say"no". I'm happy for your hair regrowth after just 2 1/2 weeks!
My son won't let me see under his hat, but I think his eyebrows have stopped falling out so that, to me, is positive.
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Permalink Reply by Lindzzej on
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Insurance denied me, I appealed and they denied again. Then I actually switched insurance companies and attempted again and was denied by them as well. Its so exhausting fighting with them. I was really defeated and exhausted after being denied over and over again. I feel for children with this disease because I lived it. Good luck and I'm here if anyone wants to talk.
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Lindz when you see you have been fighTing and now finally on it does that mean u got insurance to cover it ?
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No, insurance denied me, multiple times, I have it through the hardship program.
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Permalink Reply by Xeljanzmiracle on
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CONGRATULATIONS Lindzzej!!! I'm so happy that u finally took advantage of the Hardship Program. It is specifically denied for those whose insurance denies them. In fact ur insurance HAS TO DENY to qualify for Hardship Program. Once a person qualifies, they get the Xeljanz free of charge and it is delivered free of charge by Fed X straight to ur door by Xelsource's pharmacy, Sonexus. For enrollment information Google Xelsource.
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Thank you :) I was so happy when it arrived, and I'm already seeing results within a month.
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Needs log in information
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I couldn't log in either
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Permalink Reply by sadele on
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I logged in and it was easy. You just need an email and password. There's good information on the website.
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Great article. Really hopeful. Thanks gor sharing. I really hope in 2 to 3 years as the article says we will have a viable treatment.
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