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 LIU CHUNXIU on March 13, 2017 at 8:52pm
and people relapse while they take it. i think Ruxo will not.
Permalink Reply by Return_life on March 13, 2017 at 9:05pm
u can have relapse with any biologics.
at some point your immune system becomes use to the drug and does fight it well so the medicine is not effective anymore. for some lucky people you can stay all your life on the drug without relapse. we can't predict!
Permalink Reply by dreamscometrue on March 13, 2017 at 9:12pm

And that's the part I don't like, which is why I'm glad I have choices. Take the meds and maybe or maybe not suffer adverse effects but get hair results, or continue to be hopeful that something better is out there, lees adverse to side effects. You're right we can't predict but its up to each individual to know your body better than any doctor, after all its you that lives with you everyday and you know your body better than anyone. I work in concert with my doctors for me, not the other way around. An informed decision is a smart one, and its good to read up and educate yourself and not rely on the words of a doctor or pharmacy, and wonder why things don't work

Permalink Reply by LIU CHUNXIU on March 14, 2017 at 12:55am
has anyone bought Ruxo in Turkey,telephone or e mail ?How much?is it the real not fake medicine?
Permalink Reply by sadele on March 14, 2017 at 3:15am
Ruxolitinib is more costly than Xeljanz.. it's approved for bone cancer, which is why insurance companies will not cover it for Alopecia. Out of pocket it is around $11,000 a month. I've been on this forum for 3 years and have not heard of anyone taking this medication. People talk about it but I have yet to know anyone take it. Trust me, if I could get it I would try it. And I'm sure a lot of others would as well if there were stories of success. The JAK's are working for a lot of people, however, it's incomplete for full remission for many. Hopefully something will come out that really works for the stubborn responders.
Permalink Reply by LIU CHUNXIU on March 14, 2017 at 3:32am
baricitinib is also jak1.2 hope cheaper than ruxo.
Permalink Reply by LIU CHUNXIU on March 14, 2017 at 7:44am
baricitinib will be on the market april 1st in german.
Permalink Reply by Return_life on March 14, 2017 at 7:45am
send me a private message
Permalink Reply by Starshine on March 14, 2017 at 12:52pm

Hi Football Fan.  How are you doing now?  I agree with the others that you need to try another biologic.  Hopefully Baricitinib will be available in the not so distant future.  My hair never did get a lot of pigment back.  It did turn a little more blondish, but a far cry from my original color of dark brown.  It is hair, however, so I am not complaining.  I am currently alternating between 3 and 2 pills a day.  Stay positive, I really believe one of the other biologics will work for you too.  I have attached a pic of my hair after two years on Xeljanz at 3 pills a day.   

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Permalink Reply by Rascalx2 on March 14, 2017 at 12:59pm
Wow starshine! Are you AA or AU?
Permalink Reply by Starshine on March 14, 2017 at 2:50pm
I started AA, but turned AU. Had no scalp hair or body hair when I started Xeljanz two years ago.
Permalink Reply by sadele on March 14, 2017 at 1:11pm
Starshine, I am So So happy for you! Wow! I was almost there but had to stop the medication... starting back next week. Did your lashes and brows grow back? Oh how I miss mine... I appreciate you for sharing a picture, I really believe it encourages a lot of people on here when we can actually SEE progress. Thank you!

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