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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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I understand. My son was a minor when he started Xeljanz and there is minimal to no research and literature on it for children. When it was offered I gave him the green light risks and all.
And I still believe he should be taking it as he does. The medical risks are minimal, the psychosocial setbacks are close to 100%.
It's a no-brainer in my mind.
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Dear Christopher's mum,
Yes for me if I continue to respond and can continue to get a affordable source then I will continue indefinitely. Most of the academic literature suggests the side effects are manageable and/or not really too significant. Indeed one study I read there were more negative health outcomes unrelated to alopecia amongst the placebo then the Xeljanz takers...not to say it hasn't got effects but, as you very wisely stated- psychological health is of great importance and impacts on other aspects of our health too... to a significant degree.
Also I feel it's important for me to do all ican to find a solution given that there does seem to be some genetic aspect to the disease. The only thing more heartbreaking to me then this happening to me would be watching this happen to my son or daughter without being able to offer a workable solution. In that regard I totally admire you as a mom supporting your son as you do. We want the best for our kids and if this is a solution and I've gone before them then I know what to do if it strikes them.
Ugh... just wish more research and more affordable solutions would become widely available to the alopecia community in general. It feels like there is a solution out there but the backing to discover it is lacking...
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On a bit of a hopeful note re research....My son's dermatologist said a lot of research is being done for alopecia areata. He didn't say this next part, but I think if alopecia areata can be solved so can male pattern baldness and BOOM! It's a financial windfall for whoever discovers it.
I have vitiligo so I think my genetics contributed to my son's AA. And I do feel guilty about it.
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Yes it's hard with genetics. We can't do much about it. I think if I was alopecia free I may have considered another child but just feel don't want to pass these genes on and really don't think I can cope with the stress of alopecia and the stress of a newborn child. Anyhow I don't birth very easy, lots of complications and very high risk so alas I think my two are my meant to bes... that said I am the only one in our known family history on both sides that has had an obvious autoimmune disease so just my luck...
That said your son is extremely lucky to have such a loving and supportive Mamma! You sound like you love him so much and have done everything to help him cope with this! That's amazing and I hope you realise just how fantastic you are as a mom realising that this is not just "skin deep" - it has ramifications for our physical and mental well being.
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Hello, Christoper's mom:
I don't think that you should feel guilty about your gene. Nobody is perfect in this world. You are an amazing mom!My daughter is Teen and going to try JAK inhibitor. Thank you for sharing. Doctor indicated that she can switch to a safer drug or more effective topical JAK hopefully in the future if she has to take it forever. All the best
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Thank you for the kind words. I am sure there will be safer options for our kids and others in the nearer future. Good luck to you and your daughter. Keep us posted!
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Permalink Reply by DJ88 on
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Is xelsource still covering this drug for people making less than 90,000 a year?
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I just re-applied for the hardship program and they told me that if you are married, the cutoff is 64,000. It used to be 90,000. Not sure what the cutoff is if you are single.
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i dnt know if any of u have heard but my dermatologist has pointed out that there are new findings in Japan that Alegra helps for alopecia. Has anyone else heard this? I have heard this twice from two distinct sources
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Permalink Reply by Rascalx2 on
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I had my derm suggest trying Allegra for Alopecia but I didn’t want to take it because antihistamines wire me up... I believe it’s an antihistamine. Anyway, I didn’t take it because xeljanz has really helped and has grown in substantial after raising my dose to 20 mg a day, and derm gave shot in my ass of cortisone which helped get over the hump.
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Does anyone see a predcribing dr.in Philadelphia I need these meds csnt find a Dr.
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i really cant wait for xeljanz to be fda approved and be recognized by our insurance companies? Im guessing its something far fettched
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