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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 mastros on
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hey hang in there. it's tough indeed. it could be on the people around that it doesn't seem like you are losing, yet you know your self and head.
if you lowered your dose, how about increasing it again?
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Hey NewJack, you hair looks awesome. Every time I look at your pics I get an urge to hang garlic from my neck. You're like werewolf hairy dude! lol :)
I guess you know better than anybody if you're losing, but be sure it's not just anxiety or fear or if it, rather than the real thing. This stuff messes with our heads.
11mg to 20 is a huge almost double increase. If 11mg worked for you, and you feel you need to bump it up, why not try 15?
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I was originally on 15 then dosed down to 11mg and I noticed shedding and got spots on the side of my head .
My doctor put me on 20mg for now till I stabilize :)
Thanks for the good chuckle haha
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Anytime! If we can't laugh, we got nothing:)
Did your doc mention how long he/she wanted to keep you at 20mg?
The mild thinning could also be from the prednisone you had earlier this month if I remember right. It happens to some people to varying degrees. If so, it's temporary. You still got crazy thick locks dude! :)
Came across an interesting article on Dr. Donovan's blog on tapering Xeljanz for AA. https://donovanmedical.com/hair-blog/tofacitinib-taper
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She put me on prednison on 20mg a day only for 5 days.
I also have rosacea, when I went down from 15mg to 11mg I got really bad roseca acne and it was inflamed. She gave me prednisone for that which it helped. This was all around the same time my I was getting AA spots on the side of my head... And it was only a few weeks later I really noticed the shedding.
Interesting enough it was about 12 weeks I was on my lowered dose and I started to get these side effects-->
My hair/scalp began to burn, mostly the top/crown of my head. It felt like my scalp was on fire! The feeling was too familiar when I first developed Alopecia/AU
I have been on 20mg for a little over a week, and I no longer feel my scalp on fire, and my spots stopped moving. My hair isn't shedding as much in the shower, and funny enough, my inflamed acne has gone way down and stopped spreading...
I am not sure if the xeljanz had anything to do with my acne, I did start using other products for it, like probiotics meant for acne and tea tree oil as well as specific facial cleansers.
I am not saying this is all related to Xeljanz... I did have acne before I had Alopecia and I was on Accutane.. It was only 10 months later after I finished accutane I developed Alopecia. And its been a full 2 year I even had this type of inflamed type of acne again, and it came up when I lowered my dose and got a few spots...
It can just be a coincidence.. But it certainly is interesting!
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In my opinion I highly doubt it is a coincidence. All those things are related to your immune system attacking your body and when you take a immunosuppressant such as xelijanz it makes sense that the symptoms disappear as your immune system isn’t as “active” as it was before. It also it also makes sense as you lower the dose and let your immune system become more “active” that the original problems come back. I had terrible acne as a teenager, went on accutane, had “odd” health issues in my early to mid 20s before getting alopecia. Nothing worked, but I recently changed my diet and I cannot believe the difference in my life. My alopecia is reversing, I’m coming off an anti-depressant I’ve been on for 12 years(just so you don’t say my alopecia is reversing because it’s the side effect of the drug. I stayed on the exact same dose while my alopecia was reversing, that I’d been on for the previous 12 years. I also had a full head of hair for 9 years while on the same dose of the drug). I am mind blown I’ve never been able to wake up early in my life and now I have no problems.
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Thanks Coco, l definitely will be more aware of what I put into my body .
This all started when I took doxycycline for almost 2 years straight with no probiotics. As soon as I came off it my everything in my body went haywire .
I am looking to rebuild my gut Flora with strong probiotics and glutamine .Which I am taking now .hope hopefully a year from now it I am in a better state .
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What diet are you on I've been on xljanz 3 months , kenalog injections for 4 years and nothing seems to work for me.
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For those of you that had a minor relapse and had to increase your dose back up, how long did you have to wait till you saw results .
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Hi NewJack,
im in a similar boat. So far very minor- in fact- my husband thinks I’m a idiot as to look at no difference but it’s just the dreaded hair in the shower and comb- still not massive but went from absolutely no hair coming out to hairs in comb and some in hands when shampooing. We are having a massive heat wave here and that could be causing it too, though I know it’s related to stress. Fingers crossed for us both! I feel a bit silly complaining as I still have hair and lots of it, and I know on here some are really struggling with getting growth- but it’s just the change that scares me, and the how out of the blue this condition can strike. I do think we’ll be ok- just gotta give the meds time to kick in and overcome the flare. Thinking of you and hoping it resolvesnquick x
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