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 Frida Rupert on October 26, 2018 at 1:41am

I really hope anything in the pipeline comes out soon- I would be so happy to see those who haven’t had good luck with this med have an option.

Permalink Reply by NicoleT on October 24, 2018 at 10:05pm

Beautiful Frida!!

so amazing, such a gift 

Thanks for sharing!

Permalink Reply by Frida Rupert on October 25, 2018 at 2:44am

Thank you Nicole- it took awhile to get going but I am so thankful that I’ve responded and got the info necessary to get the dose/time frame right. Also my doctor - he went above and beyond for me and I love him for it. In someways I feel like I’ve been given a second chance at the life I had before- though it is bittersweet - I feel very very sad for those who don’t respond and am hoping there is an answer for them soon, I feel like I know that feeling of despair  and don’t want anyone to feel like that.

Permalink Reply by LuLu on October 25, 2018 at 5:35am

Thank you Frida, you look pretty. Hope my hair stop shedding soon...

Permalink Reply by Beth on October 25, 2018 at 6:53am

Nice! Something to look forward too ! Thanks for sharing

B~

Permalink Reply by ChrisPowers on October 25, 2018 at 10:58am

You look fantastic.

Permalink Reply by Frida Rupert on October 25, 2018 at 5:24pm

Thanks so much Chris. Hope you are well.

Permalink Reply by katiegirl on October 25, 2018 at 5:54pm

Beautiful growth frida. Love to see success stories! While I had regrowth I never got my lashes back like you did! Looks amazing! Enjoy your new hair! 

Permalink Reply by Frida Rupert on October 26, 2018 at 1:45am

i feel so lucky to have responded as I have. Hopefully if something new is released it might be something that will bring your lashes back. I do use lumigan/careprost/latisse on the brows and lashes and I do think that helped. It’s great you have your hair back though! Wonderful to hear of others success.

Permalink Reply by JG on October 26, 2018 at 5:41am

Frida, you are beautiful! Hair looks so healthy!!! Thank you for sharing!

Permalink Reply by Frida Rupert on October 26, 2018 at 6:28am

Thank you JG- that’s so kind. Funnily enough my hair is probably the healthiest it’s been since my high school days as I am not colouring it or overstyling. Once you’ve had no hair- if/when you get it back you treasure it more. I haven’t had a haircut yet and I don’t think I will for ages, even with my little curls at the back looking a bit mullet like- I think I’d cry to see the hair snipped off - I am so thankful for every inch and strand. I hope you are doing well too xx

Permalink Reply by Beth on October 25, 2018 at 7:10am

I was on 10 mgs for 4mos then this September up my dosage to 15 mgs bc I started shedding . This week I stared the mini puke if steroids dexamethason 4mg twice daily.  Shedding has subsided but not completely gone. I probably lost 20/30%of hair regrowth . Again not to upset, wasn’t as bad as the first time lol. And I know reading from these blogs it takes the right dose , which I think I’m getting there. So there hope!! EE6ECC57-60ED-4B3B-8C3F-E24886816537.jpeg But here is my concern. Although the while my hair was grown the top of my head was not ... see picture . Any suggestions/ input/ comments that might help me out  would be greatly appreciated!!   

Please and thanks all 

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