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 Starshine on February 9, 2016 at 8:28pm

Hi ADML, good to hear from you.  So glad the regrowth is continuing, it looks great.  I have been on for a year now with 98 percent regrowth, just some areas that are a little thinner.   Were you able to get the topical, or are you not going to bother.  Glad you are back on the forum, and really glad you are getting your life back.

Permalink Reply by AlopeciaDestroyedMyLife on February 10, 2016 at 11:48am

Thanks everyone, It makes me very happy to see how well Xeljanz is working for you. 

Permalink Reply by AlopeciaDestroyedMyLife on February 10, 2016 at 11:54am

Hey Starshine, 

That's absolutely stunning news! In truth I've been having a very hard time getting hold of the topical version. The only place I can get it is in the USA as none of the other countries can as of yet.  I will be going back there in a few months so will get hold of it then. I would be very interested in trying both the tablets and the cream at the same time. 

Permalink Reply by chris_s on February 10, 2016 at 2:22pm

Great results! you must be one of the longest continuous users for AA at 20 months; Any side effects? Have you been getting regular bloodwork or other tests for side effects? 

thank you for your updates

Permalink Reply by AlopeciaDestroyedMyLife on February 11, 2016 at 12:10pm

Thanks, I was AU for 10 years . I had more colds than usual for the first 12 months or so and I did have the flu and fever once but I haven't run into any issues for a while. I get blood tests done roughly every 3 months now.

Permalink Reply by Juan on February 11, 2016 at 5:04pm

Do you do sports? I play Football (Soccer) regularly so I am afraid if taking xeljanz might affect my performance on the field negatively? Did you experience any side effect related to that?

Permalink Reply by cws on February 11, 2016 at 11:19am

Looks awesome dude...glad to see you doing well.

Permalink Reply by AlopeciaDestroyedMyLife on February 11, 2016 at 12:10pm

Thanks CWS do you have complete regrowth now?

Permalink Reply by cws on February 11, 2016 at 12:46pm

I still have a couple of places on my head that are super slow...I went to 3 pills a day to see if it would knock them out but 6 months later and there isn't much growth on them. We are going to go at them with a local to see if we can kick start it and see if the xeljanz takes over. I am now back to 2 pills a day. My legs have about 30% growth...also very slow. Nevertheless, I am still happy with where I am. Everything else is 100%...arms, chest, facial.

Permalink Reply by gowml on February 10, 2016 at 11:38am
Is anyone responding to the topical Tofacitinib cream? A couple of people have reported zero response a few weeks back and I'm wondering if anyone had any updates?
Permalink Reply by jesse in NJ on May 5, 2017 at 11:12am

My daughter has been using for 8 weeks with no unambiguous results. Also, just yesterday Incyte pharmaceuticals stopped their development of the topical Ruxocitinib(?) based on their phase 2 trials results to date :-(

Permalink Reply by cws on February 11, 2016 at 11:17am

I am hoping this drug will come to market this year...it will give xeljanz competition and have a safer profile.

" Baricitinib demonstrates approximately 100-fold greater potency of inhibition against JAK1 and JAK2 than JAK 3 in kinase assays."

I am hoping the JAK 2 realm is where we need our point of attack to inhibit this crappy disease.

http://www.managedcaremag.com/news/new-drug-application-submitted-o...

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