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 gowml on February 24, 2016 at 12:29am

It's been a few weeks since people started posting about going on topical Tofacitinib from the Philadelphia pharmacy. Could you guys please report on your progress (positive or negative)?Thanks everyone!

Please use the dedicated thread below. 

Topical Xeljanz

Permalink Reply by Denise on February 24, 2016 at 3:26pm

Just got home from to  doctor i have  Universalis, I loss all my body hair from head to toe. Well the doctor she just prescribed me xeljanz so I am praying for results I have been on prednisone, methotrexate, I have been getting prednisone injection for my eyebrows they are growing backing I just had another injection today.I am so######### unhappy I am ending a 13 year relationship you know it takes a disaster to realize what's and who's important I have been taking care of everybody and stressing about everything but when you have to be the one responsible everyday all the time it can where you down, and I have grandchildren that are spread about it's a mess. I am so heart broken, I just got over being angry at god because I said out of all I have been through now this I got to be strong. I say to all of us in this alopecia world let's all stay prayerful and be blessed with hair.

Permalink Reply by Xeljanzmiracle on February 24, 2016 at 10:39pm
Welcome to this Xeljanz support thread Denise! Your eyebrows can grow back without the painful prednisone injections now.
Permalink Reply by Kris on February 24, 2016 at 6:08pm
Has anyone tried other treatments such as cyclosporine or methotrexate or topical DCPC before Xelijanz? Any luck with these or side effects. Trying to figure the best path to get some hair as I lost it all to AU in last 4 mths. Tx
Permalink Reply by Villa fan on February 24, 2016 at 6:50pm
I have had success with Cyclosporine and Methotrexate. At the start of 2010 I had progressed to nearly Alopecia Totalis with slight eyebrow loss, having read the treatment regime of Dr Pascal Joly from Rouen, France. I commenced treatment with Methotrexate at the end of March 2010 and by the end of the year I had near complete regrowth whilst taking 25mg weekly. I continue on Methotrexate to this day and this hair growth has persisted with periods of a bit of loss (maximum about 5% to 10%) occasionally, which is usually when the dose is tapered. I have recently travelled to see Dr King and have recently commenced Xeljanz to see if it is even better than than the Methotrexare and am tapering off the Methotrexate, replacing it with Xeljanz.

Having tried Methotrexate and Cyclosporine, I would recommend trying Methotrexate first. My main reasons would be that it was more efficient than Cyclosporine for me, it is very cheap, and if respected caused myself no side effects for myself. If you are in the UK, I would recommend an appointment with Dr Martin Wade, London. Hope this helps, good luck.
Permalink Reply by Jckah on February 24, 2016 at 8:23pm
Hey guys, it's been a month since I stopped taking xeljanz and in the past week most of the hair on my scalp fell out, lashes are gone, and brows are thinning. Arm hair game is strong though.
It was cool trying xeljanz, I wasn't even sure I still had the ability to grow hair after 17 years of not one hair on my entire body, but messing with my immune system just isn't an option for me. I dropped a bottle of xeljanz off at my Dr.'s today and that's going to be sent to New Jersey for compounding, which is going to cost $100. I look forward to seeing how I respond to that. in the mean time, I just set up a consultation with High Definition Hair in the city and I'm gonna purchase myself a pretty new wig
Permalink Reply by Xeljanzmiracle on February 24, 2016 at 10:19pm
She stopped on purpose. Her hair regrowth was great. Xeljanz is a treatment, not a cure, that she decided to try temporarily. We appreciate all the positive posts you shared with us Jckah!
Permalink Reply by Jckah on February 24, 2016 at 10:30pm
Thank you xeljanzmiracle!
Permalink Reply by Football fan on February 25, 2016 at 1:49am
Jckah so sorry to hear about the hair loss after just one month it happened so quickly!The one good thing out of this experience is you know you can grow your hair back and hopefully in the near future there will be other treatments that don't effect are immune system and target just the hair loss.In the 5 years since I got this terrible disease it has come a long way.How long were you on xeljanz before you stopped and did you have complete regrowth?
Permalink Reply by Xeljanzmiracle on February 25, 2016 at 8:46am
OK everyone! Here's my "Little Fro that must continue to Grow, from Bare to There!" Six months on Xeljanz
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Permalink Reply by Jen on February 25, 2016 at 1:55pm

Thank you so much Jckah for keeping us posted. I was following your progress and I had hoped your gluten free diet would let you keep the hair once you discontinued the med. 

Permalink Reply by Jckah on February 26, 2016 at 6:12pm
Thanks Jen! I figured it was worth a try. I really did enjoy being gluten free though, there was significant decrease in joint pain, inflammation, stomach issues, and skin rashes which have been a problem for me since I became full AU 17 years ago. I plan on remainging gluten free

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