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 Mashloum on October 28, 2018 at 3:38pm

As an update for my son Anas using Xeljanz since first of April 2018

Permalink Reply by singh on October 28, 2018 at 4:13pm

Absolutely fantastic!! So happy for him !! I hope it continues! :)

Best wishes.

Singh.

Permalink Reply by Mashloum on October 28, 2018 at 4:16pm

Many Thanks!

Permalink Reply by Frida Rupert on October 28, 2018 at 4:26pm

Oh my goodness this is wonderful! Is he excited? It’s just so great to see how well he’s responded. And what a good dad he has!

Permalink Reply by singh on October 28, 2018 at 6:38pm

You look great too Frida! I’m so happy seeing everyone’s results ! Gives abit of hopes to people who are still suffering with this horrible disease.

Kind regards 

Permalink Reply by Frida Rupert on October 28, 2018 at 9:42pm

Thanks Singh- have you started yet? Hoping to hear of your journey soon.

Permalink Reply by singh on October 29, 2018 at 9:43am

Hi Frida,

Will hopefully start this week and if I get good results I will update you.

Thank you,

Kind regards.

Permalink Reply by kevin on October 30, 2018 at 8:58am

hi frida I increased to 20mg a day it will be 2 months and I do not see any improvement in hair levels. How long did it take to see an improvement when you increased the dose?

Permalink Reply by Frida Rupert on November 1, 2018 at 5:53pm

It took about 2 months from memory but I also started pulsing steriods not long after. Is there any more hair coming in? It could just be your body needs a bit more time. I was a relatively recent alopecian - as in I had gone Au only a few months (I got my first patch in December 16, was Au by June/July) before starting xeljanz so maybe your body just needs time to adjust.  

Permalink Reply by Shad on November 7, 2018 at 12:37pm

Hi Kevin, any resault from Lab ? Thanks 

Permalink Reply by Mashloum on October 29, 2018 at 2:15pm

Thank you Frida, yes he is happy for that and he visited barber for the second time, when he start dressing the heat for my son my tears jumped !

Permalink Reply by singh on November 4, 2018 at 7:34am

Hi,

Are you allowed to drink while on xeljanz ?

Just wanted to know for future reference as if I was to start it, and a party comes up or I wanted to go out is it possible to have a few drinks ? Even if it’s a one off ?

Thank you in advance for any info

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