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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 Kat on
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Hi @Cassidymain , which drug? I'm on a trial for Baricitinib in Dallas, TX.
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Bonjour kat je prends xelanz depuis 1 an et 3 mois, j'ai une très bonne repousse sur tout le corps mais les cheveux sont difficiles à pousser.
Depuis 15 jours, je prends 2 comprimés du matin de xeljanz et 1 comprimé de baricitinib, 2 mg le soir
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vous êtes sous baricitinib depuis combien de temps?
J'ai lu un article où il veut essayer un inhibiteur jak 1,2,3
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Hi Kat, im on the trial for the PF-06651600 drug! It’s in the works to be the first approved drug made specifically for alopecia. i’m in the trial for the last stage :)
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Is that a jak1 and 2 or the jak1 and 3
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It’s actually a jak 3 inhibitor! The results seem to be really good with less side effects. It’s been fast tracked so it seems to be looking good for getting approved. Phase three ends beginning of 2020 and then there’s a two year extension. After that it will be evaluated and should be approved not long after!
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Ah, that’s what I was told when I checked the first time. Any hint of when it would be available if results are good?
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Permalink Reply by Mashloum on
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Hi Frida
I have a concern and I need your advice in case this is normal
My son has different patches and it started to be bigger than it was, is this normal after using the medication for more than one year or it is related to Alopecia cycle up and down from time to time
maybe because he was not taking the full table on daily since he was missing one half from time to time
the problem that the physician here has very limited exposure to advise in this regard, and I started to change the dose by giving the one full tablet one time, and discuss with my wife(x pediatric nurse) to increase quarter to reach 1.25 tablet, since the other topical cortisone or hair origon not that much effective
what do you advise in this regard
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Hi Mashloum- sorry it’s taken me awhile to get back to you. I think it sounds like a flare - others (including myself) have had temporary shedding or patches develop while on treatment. Some seem to surround triggers (stress, low iron, illness) and the most effective way to deal with it seems to be a temporary increase in dose to stabilise, and then when all stable go back to a lower dose. In a child even things like growth or hormonal changes could impact the underlying alopecia. I haven’t heard of anyone getting full regrowth and then losing it all while still taking the meds (though there may well be people who have had this happen) but getting a patch or some shedding seems to be something that does effect some people. I think trying to increase ferritin, vitamin d etc while doing the slightly higher dose may help calm the immune reaction too. The only other thing I could suggest is some steroid injections in the patches (this seems more effective than topical) but for a child this might be quite traumatic so I would start with that quarter increase and then give it a month or two and then reassess the dose.
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Many thanks Frida for your response, today I visited the doctor and his advice was similar for your advice
he said that we need to do Cholesterol test to check for increasing the dose, I will increase half tablets with other supplements for iron and V-D
i will keep you updated for the progress
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Hi Frida
I raised the dose to 1.25 tablet and going to raise it to 1.5 x 5mg daily to control the hair
shedding, please if anyone has any other advices share it since I am concern from the expedited trend for the shedding
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