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 HS on July 30, 2015 at 1:29pm

YAY!!! I'm so excited for you!! Also, i'm so glad you posted these pics with the iPhone light on your arms because that made me do that to my arms and now I see MY hair growing in too!!! I started Xeljanz on July 2nd! I have hair all over my head and I have little eyelashes coming in and hair in my nose and on my face and some eyebrows too - but I JUST saw hair on my arms thanks to YOU!!! :)

Permalink Reply by Nickibee on July 21, 2015 at 9:13am
8 weeks on xeljanz 10mgs daily. Had complete loss on my arms until now :)
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Permalink Reply by Megn on July 21, 2015 at 9:40am

Ahhhhh! That is so super cool for you!!! :)

Permalink Reply by Jckah on July 21, 2015 at 10:46am
Thank you Megn!

Nickibee, beautiful!
Permalink Reply by singh on July 21, 2015 at 10:42am
That's so cool mate!! You had any regrowth on your head nickibee?
Permalink Reply by Nickibee on July 21, 2015 at 6:38pm
Small spots. I was totalis, so anything is a victory. I have 3 small patches of hair that has turned color. Looks like a lot of small fuzzies. Hard to get a good picture of that yet. Hoping at 12 weeks to have something to show you guys :)
Permalink Reply by Chubs on July 21, 2015 at 7:43pm
News to report- met with Dr King today- 4 months in my son has tremendous regrowth- good news- update on clinical trial results- they will be out in October 2015. He did say based on patients on the drug this far- it is the definitive treatment for Alopecia- update in Kyle Rhodes- stopped taking meds due to cost if drug- unfortunately he has now lost his hair again. Still no cure in sight but at least some good treatment options. Now we wait and see if after clinical trials FDA WILL APPOVE IT AS A TREATMENT- also concerned about long term side effects.
Permalink Reply by Chubs on July 21, 2015 at 7:45pm
Sorry for the typos autocorrect sucks and typing on my iPhone is not easy for my tired eyes
Permalink Reply by Football fan on July 21, 2015 at 7:57pm
Just called xeljanz about the 10,000$ hardship card.You have to make less than 90,000$ a year and prove it with 2014 tax statement and a pay stub.I called twice and talked to two different people and got the same answers plus fill out forms they send you in the mail.Im sure they will ask you if you have RA then how would you answer that!
Permalink Reply by katiegirl on July 21, 2015 at 8:01pm
Yes I was not given that information when I called. Woman made it seem like i was already approved. but I called again today to clarify and they said the same thing. I sent in my 1040 they said I should be approved. They also know I am using it for alopecia
Permalink Reply by Football fan on July 26, 2015 at 11:46am
Hi katiegirl just received my paperwork there's a section that says clinical prescription info to be filled out by the doctor Diagnosis RA,RA with systemic involvement or other.The doctor will have to fill in AA there.Are you sure they will approve it. I don't want my Doctor getting into trouble for prescribing it for AA.My husband is between jobs and on unemployment for a few weeks so I am going to send that info in.
Permalink Reply by katiegirl on July 26, 2015 at 11:52am
I mean I don't want to give out information that might be wrong but my doctor did write alopecia in the "other" section for why I am using xeljanz. I just sent in my 1040 and someone I spoke with on Friday said she doesn't see why I wouldn't be approved. She said she knows many people using it for alopecia

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