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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 sultan h on
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HS
do your eyelashes growing?
hope you get very well
and I think it depends of overlap medication
because I heard that if eyelashes grow
that mean the Xeljanz working
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yes, my eyelashes grew back. And so far, it does not seem like any of them have fallen out yet.
I actually have a LOT of prednisone on hand, so I've been taking 10 mg since I noticed the hair falling out. I remember back in 2009 when my hair was QUICKLY going from AA to AU, my dermatologist really wanted me to start a short-term, strong dose of Prednisone. I was really reluctant to that advise since I had been on Prednisone long-term in the past for Ulcerative colitis, and I didn't want to get moon-face again. Anyway, I am dosing myself now until I get to the doctor this week.... I'll keep you guys posted.
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Hi Everyone,
I just looked in my super magnified light up makeup mirror (I will never regret spending $200 at Brookstone for this - little did I know it would come in handy for alopecia!) and although all of my LONG white hairs are falling out and I have been freaking out, I think that I actually see MORE dark hairs coming in. Did anyone else experience this during re-growth? I started Xeljanz on July 2nd 2015, so I'm 8 months in. I'm going to see my rheumatologist tomorrow to check in. Maybe I'm just freaking out? All the white hair is vellus hair, right? and the dark hairs are terminal hairs? Thanks to everyone who replies. Heather
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Permalink Reply by Xeljanzmiracle on
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Hopefully when the Topamax is completely out of your system, your hair will stabalize. Please let us know what the rheumatologist says.
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hey buddy, I'd recommend you to strongly reconsider taking Prednisone-like drugs. I took it twice, one high dose per month, and I lost about 40% of my head hair. I was AA before starting this drug with about 40% hair loss on my head and now my hair all over body are really thin and yeah, I have almost no hair on my head.
Cheers
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Hi Onemoment - how much did you take of Prednisone? Did it help?
A few years back, prior to starting Xeljanz, I took the combo of 200 mg cyclosporine/20 mg prednionse a day. I also got kenalog (prednisone) injections in my eyebrows and on my eyelash lines (top and bottom.) It worked, but I gained weight and had moon-face and felt self-conscious (I am a girl and was a Hollywood wife, so I struggled with the weight gain.)
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I took 3x50mg once per month, and no, it didn't help, it actually made things bad for me, because I had to shave my head. If you wish, I can pm you photos so you can see what's the possible outcome even for such short period of using.
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Hi guys
I'm just start now Xeljanz 2pills a day
wish me all the best
and I'm gonna keep a updating
if I see new results
any advices
thank you
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Just got back from the dermatologist good news!Starting my six weeks on xeljanz cream and staring to get a little growth in the areas I applied the cream!Stopped taking Plaquenil because of headaches and cut the Zeljanz down to 2 pills a day.Anyone need a good Dermatologist in Los Angeles willing to work with AA patients let me know.
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Football fan, I am SO HAPPY for you!!! Finally some growth after months and months of discouragement. What areas did you apply the cream to?
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