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 Carlie on June 28, 2018 at 10:02pm

Thank you! I would opt for the betamethasone. I've heard that prednisone has some nasty side effects.

Permalink Reply by Carlie on July 2, 2018 at 2:17pm

Frida, are you still using minoxidil with betamethasone? 

Permalink Reply by Frida Rupert on July 2, 2018 at 10:11pm

Yes but not as regularly - since using xeljanz I get pimples on my face and scalp, the face ones are easily controlled by acne creams but the scalp ones are a bit more difficult to get rid of and I found minoxidil makes them flare a bit so I use it every other day now to give my scalp a break. I think it’s helped thicken up the regrowth a bit- not a miracle worker but definitely a good co-therapy in my book. I use generic 5% - it seems to irritate my scalp less then some of the name brand versions. And it’s pretty cheap as far as Alopecia therapies go! 

Permalink Reply by Carlie on July 2, 2018 at 11:47pm

Thanks Frida, my dr. has a 7% with Betamethasone. It seems really messy and I can't imagine how it would be on actual hair. But for now I will give it a try. Anything and everything. 

Permalink Reply by okan94 on July 3, 2018 at 5:24am

Hi friends.Is Procapil a more powerful substance than minoxidil ? Procapil has not been fda approved.Minoxidil did not work for me.Can I benefit from Procapil ?

Permalink Reply by kevin on July 5, 2018 at 11:35am

hello update month 4 a lot of regrowth in 3 weeks, thanks to betamethasone 5mg 2 consecutive days 2 times a week no side effects I thank frida for advising, I am still at 10mg xeljanz days ,,,, and 5 mg of betamethasone 2 times a week. my eyelashes started to grow but eyebrows those fill I have hair in all parts of the body but not complete it fills and I see each month a difference. I want to thank frida who is good advice

Permalink Reply by Frida Rupert on July 6, 2018 at 2:16am

Thanks Kevin! Excellent news! And I found the betamethasone the key to getting me started. I’ve been off it 3 months now ( so just on xeljanz) no shedding or anything. 

Permalink Reply by kevin on July 5, 2018 at 11:35am

Permalink Reply by kevin on July 5, 2018 at 11:38am

Moi

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Permalink Reply by kevin on July 5, 2018 at 11:39am

My

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Permalink Reply by JG on July 5, 2018 at 12:09pm

Wowww! You have nose hair! I am jealous:)

congratulations with regrowth!!!

Permalink Reply by Frida Rupert on July 6, 2018 at 2:13am

Very good growth!!! So glad it’s working!

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