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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 texas2016 on
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I have been on Xeljanz for 2 years and it did not work for me...I did get some initial growth within 2-3 months, but it stopped about month 5...and hasn't done anything for the reminder of the time I have been taking it...I have been lucky that my insurance fully covered the expense over the last 2 years...but it didn't work
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Have you done steriod pulsing? I did a post on it awhile back. A recent(ish) medical trial found it helped get people going and also to push progress on when it stalls. It may not work but then again it may. I think your initial response indicates you are responder but your body's immune system is pretty strong. Anyhow if your interested look back at my posts and you'll se my explanation. Worth a read at least. I've referenced the study in it.
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For 2 years.... what dosage did u take? Did your Dr tried to tweak the regimen a little bit? Sometimes stopping and giving an induction dose later with a different dosage can trigger something.
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I took the standard doses...2 a day...then I took 3 a day....then I took 4 a day...I also used the topical xeljanz cream...none of it worked
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I'm sorry it didn't work. I suspect you probably need a higher dose but that's risky and a very personal decision to make. Also perhaps, as I mentioned before some co-therapy with steriods. Betamethasone is a steriod that has a longer half life in your body and has been successful even without xeljanz in extensive alopecia. Pulsing means it isn't as damaging to your body(though it still has impacts). If you are keen to give it another go, it seems many have had success second time around, plus going higher then 20 mgs (I know that is scary and perhaps not something you can do) or adding the steriod pulsing for a set period (like 3 months then slowly wean off, that may work but I totally understand if that's too much for you- it's a very difficult psychological journey, hope, disappointment, exhaustion.). Can I ask how long you have had alopecia?
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I have had alopecia since I was 9...I am 44 now...most of my life I dealt with areata with one or two small spots...however it got worse in my early 30's and got better to where I basically had a full head of hair by 40-41...I started to lose my hair very rapidly in January 2015 and by August 2015 I lost everything
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That's tough having as a kid, I had two very minor AA experiences in my early 30s- I got a cream and within 3 months they were gone. Then 2016 got hit with glandular fever and massive ear infection- sure enough - December 2016 I saw a patch- in as AU by August.... xeljanz has bought it back but still have 3 very small spots that will need injections- constant anxiety that it will come back though.... very discomforting condition.
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Early 20s I mean, I am now in my mid 30s btw
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I think you should see if your doctor could get you ruxolitinib as I have heard people who don’t respond to xeljanz might respond to ruxolitinib as it’s a different pathway way. I think is 1 and 2 jak pathway.
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@texas2016 Your situation sounds very similar to my twin sisters. I am on here researching new option for her treatment. She initially responded very well to Xelijanz but then had to go off of it because the study at Columbia ended. She is back on it now, but it isn't having the same effect. She has been on it for about 3 months, and there is no sign of regrowth. Did you ever try ruxolitinib? Or would you recommend anything else? This has been pretty devastating for her.
Also, are you getting Xelijanz prescribed by a doctor? If so, how? My sister and I have tried to fake RA, but it has been unsuccessful in landing us a Xelijanz prescription. We most recently purchased it for $1,500 for a three month supply in Turkey. Again, it recently doesn't seem to be working but since it had such a great initial effect, we are still trying. It is discouraging to hear that it never started to work for you again... :(
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