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 Fighting Alopecia on February 13, 2016 at 8:15pm
Beautiful katiegirl! One day I hope to put a picture up here of myself and have my success story.

Wish everyone here the same.
Permalink Reply by katiegirl on February 13, 2016 at 9:32pm
I hope so too fighting alopecia. I want everyone on here to have their hair back. I wish no one ever had to experience this awful disease.
Permalink Reply by kevin on February 14, 2016 at 1:19am
Permalink Reply by Fab on February 15, 2016 at 7:48am

Salut, c'est une super nouvelle ça!!

Je serai tenté de participer à ces essais mais impossible de trouver un lien pour s'inscrire (je suis à Marseille).

juste cette page qui reprend l'article du figaro

http://www.20minutes.fr/sante/1784735-20160211-bientot-traitement-e...

En tout cas ça fait plaisir qu'une alternative au ruxotinilib et au tofacitinib arrivent.. et en plus en France ;)

Permalink Reply by kevin on February 15, 2016 at 2:39pm

Salut  fab alors appelle ce numero la 04 92 03 92 20 et tu demande Mlle Vaillant tu dis c'est pour les essaies clinique interlekine 2 et tu verra elle va t'expliquer comment faire il y'a de place encore , il y'a une chose c'est qu'il y'a un groupe qui recoit le traitement et l'autre il recoit un placebo .

Permalink Reply by Aurora Sophie on February 14, 2016 at 12:46am

Hi!

That is so great to see :-) I am som happy for you :-)

My child, she is 17 years and have for the second time lost the hair.

Now the last time, before Christmas she also lost the eyelashes and the eyebrows.

She started om Xeljanz 1 February this year, and we hope to see some changes and hair soon.

22 Mars we have an appointment with Dr King at Yale, then we also hope to get the cream also.

It is so painful to see someone you love so much get a disease like this.

I am really happy to see the medicine working so good on you:-)

Permalink Reply by Aurora Sophie on February 14, 2016 at 1:03am

Hi

I am so happy to see this:-) You look so beautiful :-)

My daughter on 17 years has also lost all the scalp hair, her eyebrows and her eyelashes, just before Christmas for second time..

The most devastating was to loose the eyelashes and eyebrows.

Have you heard or read that the medicine has best effects on A.U patients?

She started on Xeljanz 1 February this year and in a month we are traveling to U.S to see dr king at Yale..

I am really happy on your behalf that the medicine has been so effective :-)

Permalink Reply by katiegirl on February 14, 2016 at 1:17pm
Aurora. Best of luck to you and your daughter on this journey. I pray and send good vibes to everyone on here. Keep us posted after you meet with dr King.
Permalink Reply by Aurora Sophie on February 15, 2016 at 8:11am

Yeah

I will :-)

Thanks for giving me /us, hope and support:-)

Permalink Reply by Aurora Sophie on February 15, 2016 at 8:12am

AND:

You gave , my mother, and my daoughters grandmother, and many in our family great hope:-)

thanks <3

Permalink Reply by Xeljanzmiracle on February 14, 2016 at 1:10pm
BEAUTIFUL Katiegirl, keep "representing" as long as you can! I think its wonderful you're planning your baby AFTER your wedding. Congratulations! Do you plan to breastfeed? You will most likely discontinue Xeljanz thru that period of time also. I'm so happy for you! Valeri
Permalink Reply by katiegirl on February 14, 2016 at 1:15pm
I have not thought much about any of that yet. This is just assuming I get pregnant and what not. Of course if decided to breastfeed I also wouldn't take xeljanz. I don't even want to take it now especially not while I'm pregnant! Lol. prior to this I didn't even take a Tylenol for a headache. I'm surprised at myself what I will do for hair but I am happy to have it back for now even if it's short lived. Thank you for your support Valeri

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