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

 

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Permalink Reply by 3ebdie on June 8, 2016 at 2:04pm
After the two times you reduced her dosage, did you increase the dosage again after her hair fell out again and if Yes: did she regrow again? How much percentage of hair does your daughter have now? Thx

And one more question: is your daughter using ruxolitinib or xeljanz? I remember a post of you here where you said you bought ruxolitinib in croatia?
Permalink Reply by raffaella saccardo on June 28, 2016 at 9:15am

Yes. 3 Xeljanz a day till end of fall out.  The hair regrowth without any problem. I can say about 95% regroth. Nobody understands that she has AU.

She used last years for 6 month ruxolitinib, then she switches to Xeljanz and she takes normally 2 pills a day.

Yes, it is possible to buy ruxolitinib in Croazia but it is abosolutely too expensive, about 4.850 € for a month therapy.   Xeljanz costs about € 560 for one month therapy and the result is the same for her.

Permalink Reply by James 2me on June 28, 2016 at 1:08pm
Is she on two pills a day now or three or did she take the three to get the hair growing faster then drop back down to Two?
Permalink Reply by James 2me on June 8, 2016 at 7:52pm
Great News. Sounds like the Xelljanz is working well I'm at 3 and a half months starting to see some promising results patience is important as is keeping up on youre Labs thanks for shareing youre story
Permalink Reply by Merry on June 8, 2016 at 9:06pm

I have been on xeljanz since March 2015. i started seeing results in November 2015 after upping my dosage. I am on 10 mg. in the morning and 10mg, at night. My hair is finally thick enough and has enough color to show on a photo. I have never had red hair before, but it is coming in kind of strawberry blonde and with some curl. These photos show the front, top, and back of my hair. There is also a pic of my lashes and brows. I was AU for 6 or 7 years. My results have not been as fast as some, but I am not complaining. 

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Permalink Reply by Merry on June 8, 2016 at 9:07pm

Here is the pic of my brows and lashes. 

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Permalink Reply by sultan h on June 8, 2016 at 9:14pm
Wow. that's great I'm very happy to you Marry, but my opinion it's very high dosage isn't ?! but good results
Permalink Reply by Merry on June 8, 2016 at 9:29pm

Thanks, Sultan. 

Permalink Reply by James 2me on June 8, 2016 at 9:56pm
That's great Merry I take it you're bloodwork is Good the brows and lashes look great along with the hair also the blue eyes are beutiful.
Permalink Reply by Merry on June 8, 2016 at 11:31pm

Thanks, James2me. Yes, my blood work has been good so far, and I've had no negative side effects.

Permalink Reply by Football fan on June 8, 2016 at 11:51pm
Hi Merry in November did you have any regrowth at all?Is it better to take the pills 2 in the morning 2 at night rather than spreading it out?And when did you start seeing growth on 4 pills? Very happy for you keep us posted on your progress.
Permalink Reply by Football fan on June 8, 2016 at 11:58pm
Sorry just retread your post and saw your regrowth started in November.

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