Alopecia World
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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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Lol yes I noticed your beard was plentiful.at least if the fall is diffuse you probably can lose a fair bit and still be facially hirsuit! I know with the condition any type of hair loss induces anxiety though....
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For the most part it is diffuse with 1 huge patch and about 3 other small patches. But it's all covered up. I'm hoping it holds and the xeljanz kicks in soon but my face feels like it's on fiiiiiireeee
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I know the exact feeling your describing- does your head in! Keep thinking positive though- you've responded so well on scalp so definitely think your beard will stop shedding and regrow soon.
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Hi
I have AU for 30years and RA for 10years.
I got 10mg dosage today and doctor has prescribed 10mg more for me if needed.
do anyone have experience when should I increase my dosage?
thank for all the sharing here. Hope I can have positive result.
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I would say wait 3-6 months before increasing your dose since you've been AU for a long time. If by that time I'd increase it by 5 then wait another month or 2 and then increase it to 20. Once you start seeing hair app around and get 100% growth then your doctor may ween you back to the standard dose for maintenance.
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I only suggest waiting up to 6 months if you don't see hair because it can be stubborn. For me it wasn't long before I started seeing my hair come in. Then again I started losing my hair September 2017 and started Xeljanz January 2018.
I was completely bald on my scalp December 2017, started losing my beard in December and eyebrows as well. They've definitely lost volume and still continue to shed but the xeljanz has worked miracles on the scalp in just 6 weeks. It will be 8 weeks next week on the standard dose. Everyone is different and even with my results I may even need to up.my dose. But hopefully not.
But in the case that you do, I believe that's the regimen that you'd follow. Give it at least 3-6 months on standard dose then up it 5 mg and then another 5 of your results aren't working out.
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Thank you.
My doctor has no experience on using Xelijanz on AU.
I try Xeljanz because I find it work for AU on web.
I am so glad that I can find help on this web page.I will follow your suggestion. Hoping not much side effect happen to me.
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Hi Mavis,
i agree with Newjack, wait at least 3 months and maybe even 6 months. Some people respond slower then others but still get results at a standard dose. i think side effects are usually minor and serious ones rare. A lot of people get acne and gain weight - those side effects to me are easy to manage and having hair growth far outweigh those. Just keep your eyes on your blood results. Good luck and let us know how you go!
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Hi Frida
I will update my result.
My doctor will monitor my blood result every 2 months.
Thank you so much for your advice.
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Hi guys,
just wondering if if there are any Aussies on this site that are struggling to afford xeljanz, and that is the main factor in not attempting the therapy. Found out some interesting things while at my dermatologists office today while getting my spots injected. It's not the cure to all and there are NO shortcuts re getting the meds without a script and having a suitable specialist monitoring you but it may make things a bit more doable for some. Anyhow drop me a line- unfortunately this is only helpful to Aussies so I won't bore everyone else with the details. I haven't completed my research as yet but might be able to point you in the right direction so you can follow up yourself. Also this is not a dodge illegal thing either. And it's not at all possible without a prescribing specialist and script. It's not free and still may be unaffordable fo many but it offers options.
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