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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 vjensen14 on
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Hi! Im Victoria I have AA that was progressing rapidly into totalis. I have been on Xeljanz for 10 weeks now and my hair has finally stopped falling out and is growing back! I am very excited!! These are pictures from 5 weeks when it first started to grow in and then now at 10 weeks. Hope this gives everyone some hope!!!
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Permalink Reply by katiegirl on
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Very happy for you! Glad to see the xeljanz is working so well for you. It gives everyone hope. Yay :)
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I am thrilled to see so much success here. I'm 30, and for the last eight years my hair has gone through vicious cycles of loss and regrowth, with my poor heart going from hopeful to hopeless over and over. But now, I have hope again!!! I had my second child in March, and like my first pregnancy, my AA went into remission. I have almost full regrowth now, four months pp, but eight months after my first child was born my hair loss came back with a vengeance and the wig had to go back on. Like many of you, I have prayed for something that would help, and xeljanz appears to be the light at the end of this gloomy tunnel! I also have psoriasis and psoriatic arthritis, neither of which are fda approved diagnoses to receive xeljanz and have it be covered, but recently I was researching xeljanz trials and discovered there is a pdufa date for this October for it's use for treating psoriasis. I happy cried. To have something that appears to be the answer to my problems and have it be out of my reach financially has been a drag to say the least. Now, I am counting the days until October. If it is approved, and this hair grows full and luscious like it once did, I will headbang it all about, run through a meadow with it flowing behind me, swoosh it over my kids to make them laugh, rough-house with them without worrying about the wig slipping, I will go swimming and ride roller coasters, I will grow it to the dang floor if I can. I just hope the growth continues until I can start xeljanz, so I'm not in a fallout period beforehand. Anyway, I wish everyone here the best of luck, happiness, health, and luscious locks! Will do before and after shots if I do get the xeljanz.
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Good Morning Everyone,
Just a quick update on my daughter. We met with Dr. King mid June and started Xeljanz. She had terrible headaches and we cut back to just one pill a day. Last week we upped the dosage to 2 pills.
Update:
Her one eyebrow is almost completely back and the other is 50% and growing. New patches and strong hair growth throughout her head. There are still some stubborn patches but even those are growing light vellus hairs. Keep in mind, she was on methotrexate which is an immune suppressor (started November 2014)...so she was already in growth mode but nothing like the last month plus.
For the first time in over 2 years we have hope and her progress is nothing short of a miracle. We are traveling back to Middlebury in August for a follow up with Dr. King.
Thank you all for sharing your heartfelt stories...it helps in those moments of darkness.
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Seahawks dad- I too had terrible headaches at the beginning. Now I've moved onto acne, which dr. King said can occur:( I'll be there in August too! Can't wait to hear your next update.
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Hi folks wondering if you can all do me a favor and I think it will help a lot of us battling insurance companies for coverage- trying to get before and after photos of folks with success on xeljanz and how long they have been on it- this drug is a proven treatment per Dr King for alopecia- it is a shame that the drug prohibits so many sufferers of this disease cannot afford it- u can post here or email me at nancy.bauer@sbcglobal.net thank you!
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Hi Everyone - I started Xeljanz 10 mg a day on July 2nd. I have vellus hairs all over my head! I have just noticed that I have light eyelashes growing in on both top and bottom lashes. And I've got a few light eyebrows growing in. I also have nose hair growing in (I'm super excited about that - no more runny noses!) Will post pictures when I'm a little further along!
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Permalink Reply by AlopeciaDestroyedMyLife on
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Fantastic HS
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