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 Nicolas on November 19, 2016 at 7:09pm

Whit eyebrwon and eyelash you can make a smp(scalp micropigmentation) and stay wonderful.

Permalink Reply by Xeljanz2015 on November 25, 2016 at 9:36pm
Hi Erdem, I had pigmentation since the beginning, but didn't grow all over at first. It's been about 1 year and a half on Xeljanz and we added Spironolactone about 6 months ago and things started moving faster.
Permalink Reply by dwhite on November 22, 2016 at 10:06am

Hello,

That's great news about your regrowth. I'm just curious...were you on a clinical trial?  If not, how did you find a doctor to prescribe Xeljanz?  I've had AU since I was 6 years old and would love to see if it will work for me.

Thanks,

Debbie

Permalink Reply by Xeljanzmiracle on November 24, 2016 at 2:40pm
Welcome Dwhite. What city do u live in?
Permalink Reply by dwhite on November 25, 2016 at 12:22am

Hi,

I live in Walnut Creek, CA...about 30 minutes from San Francisco.  

 

Permalink Reply by mtran2000 on November 25, 2016 at 6:54am
Oh boy here we go again.
Permalink Reply by Xeljanzmiracle on November 25, 2016 at 6:00pm
I live in Oakland Dwhite. My Derm (Dr. North) is at UCSF in San Francisco. I'm scheduled to see him next month if u want to meet me there and join me on my appointment. My doctor(s) are used to me bringing new potential Xeljanz users with me.
Permalink Reply by dwhite on November 26, 2016 at 12:42am

Sure...let me know when it is.  Does your insurance cover Xeljanz?

Permalink Reply by Xeljanzmiracle on November 26, 2016 at 7:37am
No, Dwhite, my insurance doesn't cover Xeljanz, which actually turned out to be a good thing because I qualified to get it absolutely free thru Pfizer's Hardship Program. Please google and then call "Xelsource" Pfizer's financial assistance center. They will inform you of the options available to get free or discounted Xeljanz. Ask them to mail you an application for the Hardship Program. When you get it, bring it with you when you meet me and I will go over it with you. Dr. North has to fill out a portion of the form authorizing your Xeljanz prescription also. Let's help u FINALLY get started on your hair regrowth journey! Valeri
Permalink Reply by dwhite on December 9, 2016 at 12:41pm

Hi Xeljanzmiracle...Thanks for the info. I tried making an appt. for Dr. North, but the receptionist said he is not accepting clients...I don't remember the reason.  Anyway, I did find a dermatologist in So. Ca. who I will be seeing in January. My biggest hurdle will be trying to get some financial assistance.  I won't qualify for the Hardship Program, but I can't pay out of pocket either.  That's wonderful that you had full regrowth.  I do think that faith has something to do with it...I will keep the faith in this process.

Do you have any side affects with Xeljanz?  I am a bit concerned about that, but I can't stop thinking about the

possibility of having hair.  I lost my hair when I was 6 years old and don't remember what it feels like to have it.  Thank you for being supportive to others on this forum.

Permalink Reply by Xeljanz2015 on November 25, 2016 at 9:39pm
Hi Debbie, I see Dr King in CT. It had been almost 20 years of AU for me and it worked, so there's hope for sure!!!
Permalink Reply by Ludax on November 21, 2016 at 12:05pm

I've had AT/AU since around 9 (33 now). Have been on xeljanz for exactly 3 months and 26 days. Have also been taking shots on both eyebrows.  I've noticed spiky little black hairs on the side of my head and a little more facial (vellus) hairs. Nothing really noticeable to the naked eye (on head), but there is definitely something going on. I started with 2 pills a day and dr. bumped me up to 3 about 2 months ago. Best of luck.  

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