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 Newjack on
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Hey guys, how long were you on xeljanz till you felt like you hot 100%???
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Hi Newjack for me- I started in August 2017 - full regrowth by April 2018 - BUT ... I didn’t see progress really start until late December/ early jan- so from the start of seeing hair until full regrowth about 3.5 months but from my first dose of xeljanz- welol that’s about 8.5 months. That required upping dose and steriod pulsing. How’s the scalp burning going- any improvement? I think I mentioned it before but I read about some guys with Male pattern baldness making up a topical aspirin and washing their hair with it ( google it- there’s some methods of how to make it from uncoated aspirin)- if it is inflammation that might ease it a tad.
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Hi Frida!
I am 6 months in I am about 90% few small spots, my hair feels super layered because some parts are thicker than others. Did you experience that at all? I am starting to feel anxious again that I will start losing it. I shaved part of my beard/scalp by my ear and it looks weird because its slower to grow (never did that before thought I was in the clear)
The scalp burning has gone down considerably, I think it actually was from all the hair splinters from shaving my head once a week and I was getting my scalp inflamed or irritated. All the hair would then fall into my beard and cause skin irritation there too. I still find small hairs from when I shaved my head 2 weeks ago in my beard, eyebrows and scalp from time to time... Funny enough it scares me that its actually my hair coming out in patches, but I'll pull on my head hair quite often and nothing comes out. My beard hair is still falling, but it is growing at the same time.. Same with the eyebrows (all nearly not as bad)
Added 3 pictures from yesterday. I haven't posted a picture in about a month.
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You look fantastic- no one would ever know you had alopecia. In terms of evenness for some reason my hair grew back relatively evenly. Had a few spots that needed injections but once it came on it kindof just all started growing at once. Indeed some people said it looked styled (I haven’t had it trimmed or anything but it’s sitting reasonably neatly- except in the mornings it kind of afros and then I wash it and comb it down.
so glad the burning is subsiding- I actually read that the crawling/prickling feeling can be a common reaction to anxiety called paresthesia. This happens in people without any hair issues and I reckon with the trauma we have suffered we are prime candidates for it. That said it probably is just those little hairs from your weekly shave. Have a google of parathesia though - it’s quite an interesting read.
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Hi Frida I would like to Thank You for all the people you have helped on this site.It seems like your the only one willing to share any information you have.Most people who grow their hair back totally disappear.Everyday your on here offering encouragement and help.Thank you
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Thanks Football fan, that’s very sweet. I just really want all of us struck with this condition to get better. I know how horrible it feels to have something so key to our self image just robbed from us. I’m gonna try to see it out and keep searching until we find a solution for everyone. Plus - I’ve spent hours and hours reading different papers and studies about treatments - I want to make it worthwhile! I don’t think I would’ve stuck it out with xeljanz if not for this forum- just want to give back a bit where I can. I just hope I don’t hog the forum space too much!
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I talked to my Dr. about the Betamethasone and she wants me to give the xeljanz 6 mos before we do more. I have an appointment with her on the 18th, I'm going to try to convince her to let me start it now. I've wasted almost 2 years trying everything. The xeljanz is working very slowly. I am almost 4 months on it and I have very tiny stubble. My eyelashes and eyebrows are coming in but they are very light, almost invisible. I second Football Fan, you have been an inspiration with all the positive support and guidance. Thank you for taking the time to continue answering our questions.
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Hi Carlie. Your progress sounds similar to mine- at four months just the barest of stubble. Once the betamethasone kicked in I had full regrowth in about 3 1/2 months. I think the best way to convince the doctors is to establish that this is short term- I would say the maximum time you’d want to be on it is 5-6 months then taper off. The risk with steriods mainly comes in with long term daily use. The shorter term intermittent use still can have side effects but generally doesnt sink our various systems to the same degree. Of course I can’t predict 100% but if you have stubble at 4 months I think you’ll probably only need 3 months and then taper off. I agree that waiting 6 months is just extending the pain, as I’m pretty sure you’ll regrow a cosmetically significant hair style with the betamethasone in that time. And thanks for your lovely words- I have gotten so much strength from this site, offering advice based on my experience is the least I can do!
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How to use Betamethasone,Is it from the oral or the vein ? My doctor did not allow me to use steroids with xeljanz.As a steroid, 500 mg methylprednisolone is used 3 times a week in the vein.I could not find betamethasone in pill form in Turkey.There are cream or bulb shapes.I found pill form dexamethasone.
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I used oral- if you can get a script you maybe able to import it legally. Dexamethasone I think would work well too as both have a long half life in your blood. I can’t offer too much guidance on dexamethasone just because I haven’t used it but i think it would still give you results.
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