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 Suzie on October 10, 2018 at 12:41pm

If you mean steroid injections, then I had Kenalog injections.  They worked for me....

insurance wouldn't cover it because it was considered "cosmetic".

Permalink Reply by singh on October 10, 2018 at 1:15pm

Thank you Suzie, 

its just incase I might try them I was thinking what type of steroid to use like predisilone etc. But I will note that down.

its ashame people say it’s just cosmetic, I’ve even seen people on here who suffer from alopecia call it “just hairloss” . 

People who suffer AU and AT for them it because more than just hair loss in my opinion.

Permalink Reply by cws on October 10, 2018 at 1:34pm
Permalink Reply by singh on October 10, 2018 at 1:44pm

Wow thanks for that CWS! I had heard about this drug but never thought it for alopecia but just another JAK inhibitor.

looks like there is a very clear link that links all these diseases and clearly a pathway or 2 needs treating.

This will hopefully the minds of the people who call alopecia cosmetic as to me in that case eczema is also cosmetic ! ( it’s not like am just saying )

Thank you.

Permalink Reply by Lindzzej on October 10, 2018 at 2:46pm

Thank you cws!!!! This is really good information! I’ll be researching / mentioning it to my derm this month!

Permalink Reply by sasha1 on October 11, 2018 at 5:25am

Hi Everyone, 

Haven’t checked in since my last post in May or June. Been on this medication since March 2017 but did not see any form of results until August 2017. In May this year I  had my first patches, all throughout my hair. Which resulted in me having to go back on 15 mg of pred. I only just came off 3 days ago after having been weened down to 2.5 mg for 3 weeks. I am still experiencing shedding and have also got a few very small patches throughout my hair. I was just wondering whether anyone knew how long it will take for my face to go back to normal? I also was wondering if anyone else has had the same experience of getting patches once coming off steroids, as it’s happened to me twice now. Thanks! 

Here are some photos of my hair now- keep in mind I have had 2 haircuts, taking off around an inch from the ends in order to grow out the mullet I have going on! 

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Permalink Reply by Football fan on October 11, 2018 at 2:37pm

Your hair looks great!

Permalink Reply by NicoleT on October 11, 2018 at 2:56pm
HI SASHA1
So happy for your hair!!!
You are on xeljanz yes?
How many Mg per day?
Permalink Reply by sasha1 on October 11, 2018 at 4:11pm

Hi NicoleT,

yes I am! I’m on 15 mg a day. 

Permalink Reply by sasha1 on October 11, 2018 at 4:08pm

Also! I forgot To mention- when I said I had my first patches in May, I was Referring to the first ones which came since my hair had grown back. Prior to August 2017 I was AU. 

Permalink Reply by NicoleT on October 11, 2018 at 4:21pm
Thanks for clarifying!
You are my inspiration!
Thats incredible growth for 1.5 years!
Permalink Reply by sasha1 on October 11, 2018 at 4:28pm

Just in case no one saw! Does anyone know how long after coming off of prednisone it takes for the moon face to go? 

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