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 Sp06 on January 24, 2016 at 11:05pm
Xeljanz2015, how long have u been using the cream and have u seen any improvement with it at all? I only started a few days ago.
Permalink Reply by Xeljanz2015 on January 24, 2016 at 11:16pm

Sp06 I started on Jan. 6th, so I'm still new to it, and haven't seen any difference. 

Permalink Reply by dmac198 on January 24, 2016 at 11:14pm

Wow, please keep us posted!  I think the cream form of ruxolitinib took about 12 weeks to show noticeable results. The price and safety profile of the topical can be a game changer for those individuals unable to afford the pill or concerned about the safety profile of the pill.

Permalink Reply by Keithm15 on January 25, 2016 at 5:22am

So Dr King now has a compound cream for Tofactinib 2%? Where what lab is creating this for him? Would you be able to provide that info? Or at the very least Dr kings info and where he works. My Derm would like to reach out to him. Thank you. 

Permalink Reply by serg navaro on January 24, 2016 at 11:36pm
How did you get your money back? I paid 500 out of pocket when I the co pay card wouldn't cover the rest
Permalink Reply by Xeljanz2015 on January 24, 2016 at 11:44pm

I just wrote a letter and included my receipt. I had paid $1250 in September and $1250 in December. I got both checks in the mail within 2-3 weeks.

All info you need is in your copay card paper. There's the mailing address and your copay card info to include in the letter. 

Permalink Reply by serg navaro on January 24, 2016 at 11:55pm
So you wrote a letter to Pfizer?
Permalink Reply by Xeljanz2015 on January 25, 2016 at 1:21pm
serg navarro this is the info I told you about. It's on your copay card paper.
This is what is in my paper and where I mailed the request.
Attachments:
Permalink Reply by Xeljanzmiracle on January 25, 2016 at 2:59am
CONGRATULATIONS Xeljanz2015! Your regrowth (from the top that you showed us) looks wonderful. And it's great that you got your co-pay card refund and didn't lose any hair even tho you were off Xeljanz for 3 months. Amazing! Then to top it off you received topical Xeljanz from Dr. King's Trial. Where did you get the topical Xeljanz from? Which compounding pharmacy? Did Dr. King give you the prescription for it, or did you purchase it directly from him? Everyone wants to try the cream on our resistant bald spots, lol! I think that you may need your doseage upped to 3 pills a day, but maybe by March the topical will have kicked in. Please keep us posted. Thanks
Permalink Reply by Xeljanz2015 on January 25, 2016 at 3:13pm

Xeljanzmiracle, Dr. King sent the RX to the pharmacy, I just gave my credit card number and received it in the mail. We're trying the Prednisone first before upping Xeljanz dose. I tried to upload other 2 pics before, but didn't go through. I'll try to add again to show the resistant bald spots in front/sides. 

Permalink Reply by heather on April 20, 2017 at 7:04am
Hi sorry if you have been asked this but I too have oxford/united health freedom plan. We requested them to cover it and they denied it and I assumed that was it. What exactly did you do to appeal to get them to cover it? We are going broke paying out of pocket for our 18year old son ANY advice you could give me would be great!!!! Thank you for sharing!
Permalink Reply by Christopher's_mom on April 20, 2017 at 7:15am

We're paying out of pocket for our 17 year old son, too.

Are you trying to get your insurance company to cover the cream or the pills?

Have you tried the co-pay card? You get 3 bottles a year free.

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