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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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Hi Patches, I've pm'd you with some details- I'm not sure if it will help but at least it's another avenue for us Aussies to investigate. I'm still gathering info so I'm not 100% of the exact details but hope to nut out the details over the next few weeks when I can call and ask specific questions of the compounding company. Also gonna try to get some clarification from my derm.
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No news from Doctor Angela? One does not know about the onset of new things? Is stem cell therapy?
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This is my first bout with Alopecia. While xeljanz has been amazing growing my scalp I just saw 2 large patches on my legs. I just don't understand. Does this mean I'll be going totalis?
I have a bald spot on each if my outer ahins that are both symmetrical and take up the entire shin.
It actually confuses me and questions if it's Alopecia at all, but I ovbiously have to consider it.
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I would say it's definitely alopecia but that your body is cycling through a process. Ie your scalp is now growing but the rest of your body has patches that were sitting dead in the follicle before you even started xeljanz. I read somewhere that hair grows in a 3 to 4 month cycles- so during the "resting" phase - your hair will still be in the follicle but it's gonna fall out when new hair growth b hind it. My guess is that you were gonna go AT/AU and many parts of your bod have hair in resting phase. Xeljanz has started the regrowth but that means hair that is dead in the follicle will still drop out and hopefully regrow straight away, fueled by the Xeljanz. That said I'm not an expert but just have read a lot about hair growth cycles etc. try not to stress. I think in the end xeljanz will bring it back but you may lose a bit before you gain if that's makes sense.
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Thanks I've been staring at my legs for so long. They're not completely bald. But what I can't get over is they're both same size, same spot on each of my legs. Which made me think it could be from something else.
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Bodies are weird. When I get pimples I often get them symmetrically... ie if I get one on my left cheek often I get one on the right cheek. This condition is so weird too. I got two tiny bald spots in my early twenties and they were symmetrical above my ears. They regrew really fast but I remember i though it could be an ear issue or something because both were above my ears...
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Wow I just found a picture from 2012 I had Alopecia Areta of my body hair. It was on my shoulders and back but not that noticeable.
No wonder I'm going through this now. I'm in a major flare. Wowowowow
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Yeah it's so weird hey, I had two episodes in my early twenties. Didn't really investigate it much as they were so tiny and I regrew straight away but then when it totally hits - like losing all your hair- it's hard to not get freaked out. Have you had yourself checked for other immune disorders? Alopecia sufferers. Have a higher incidence of other autoimmune conditions then general population as well- lucky us hey (not)
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I have vitiligo very minor but they developed a year and a half ago. Other then that no. Clean bill of health.
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Has your burning gone away yet? That feeling is the worst.
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Not really, I still feel it. It isn't as bad anymore. I've felt it for about a week straight.
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can you post a picture?
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