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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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Replies to This Discussion
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Permalink Reply by mastros on
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Hello all,
I have been doing really well in terms of hair. My bloodwork has been also all ok. I have been tapering my dose since December 2020. Instead of taking 20mg/day for the whole week, I am taking 15mg/day for two days and 20mg/day the rest. I was supposed to be on 15mg/day 3 days per week. I tried it a couple of times, had some minor tiny spots and retracted back to 2 days per week 15mg/day.
I have also been taking Minoxidil 10mg/day constantly since late 2019. My view is that it helped to close the minor spots.
You can see in the attachment my progress over the years.
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aw_may_21.pdf, 5.2 MB
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Permalink Reply by Keithm15 on
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Any issues with taking Minoxidil? My dr recommended taking it with xeljanz, but the side effects list had me slightly worried.
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Kevin per me questa sofferenza ha distrutto la mia vita per il rapporto femminile e il mio benessere.Sono così disperato, il mio medico di Detroit non vuole che aumenti il numero di cps a tonifacnix, mi ha detto che 16 mg di tonifacnix è il migliore e massimo che posso assumere per il rischio di trobosi .9 mesi ho usato tonifacnix pochi risultati solo piccoli piccoli capelli piccoli. come potete aiutarmi
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I advise you to try baricitinib jak 1 jak 2 beacon pharmaceutical sells it as generic baricitinix 4 mg
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what do you know on baricitinix???how is better than tonifacinix on the treatrment of alopecia universalis ...in my case i am bald from i am 13 years old ,i have used cortisone kenacort ,puva terapia ,acido squarico ,but when i stopped the treatrment whith this optios the hair loss not stop and i will be a alopecia universalis man...can i help me pleas???
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several people did not have results with xeljanz jak.1.3 switched to ruxolotinib jak.1.2 and had regrowth ...
baricitinib is also a jak 1.2 so you should try
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My 17 year old who is on Xeljanz got her first dose of Pfizer vaccine today. Her dermatologist recommended stopping Xeljanz for a week after the shot. Is someone here who took their shot stopped taking Xeljanz too for a week? If so, did you experience any hair loss? Appreciate your help.
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Hi! I am in a very similar position. Im 21 yrs old and on 20mg/day of xeljanz and was recommended to stop 1-2 days before and then for a week after the Pfizer vaccine. I did that, and unfortunately did experience hair loss. I had not had any new patches/significant patches in months, and now have two large patches. Could have been some stress/other things but just wanted to share my experience. Hope your daughter has no shedding!
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Thank you for your reply. Hope your patches get filled soon. I am still wondering if my daughter needs to pause the medication for a week. She will be starting her college soon and i am worried of the hair loss. Hoping to hear more experiences. Thank you in advance.
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Yeah I am in university and I totally understand. I have heard from a fair amount of peopple from here that they did not stop - or if they did it was for less time. You run the risk of the vaccine being less effective though. If I were to do it again maybe I'd only stop for 4-5 days MAX.
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Permalink Reply by Fingers_Crossed on
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Hello! I also stopped the medication for 1 day before my shot and for a week after. This was recommended by my dermatologist. I also developed a few spots. I am a nurse and I’m caring for COVID patients with a compromised immune system so making sure the vaccine is as effective as possible was important for me. You have to weigh the risks and the benefits of your specific situation I guess. To be honest, if I was going into college I wouldn’t want to risk getting spots. It’s a tough decision to make.
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oh wow! thank you for your response, honestly it made me feel like I wasn't the only one because I haven't heard anyone else mention this yet. Hope yours fill in quick!
Now im not sure what to do with my second dose and going off xeljanz.... any recommendations are welcome
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