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 JHen on April 22, 2015 at 6:24pm
Thanks James. I've read all the threads and my insurance keeps denying the prior approval. Without a prior approval you cannot use the copay card at all. I am not sure what to do. Even if they don't pay for the dirt it still needs a PA
Permalink Reply by skip on April 22, 2015 at 7:35pm

Justin I sent you a PM.  Your insurance needs to DENY it in order for you to use the co-pay card. 

Permalink Reply by JHen on April 24, 2015 at 10:16am

Hey everyone, I just got lab work back after being on Xeljanz for 4 weeks....All blood work came back great. Hope everyone else is doing well with their treatment! I am on the standard 5mg dose 2x daily.

Permalink Reply by lusha22 on April 24, 2015 at 10:32am
Justin we are on the same routine.. Just got 4 week blood work done too... Keep us posted on your progress.. Good luck!!
Permalink Reply by AlopeciaDestroyedMyLife on April 24, 2015 at 12:27pm

Good luck to all of you starting , this can be a very lengthy process depending on you're circumstances but don't give up hope and keep at it and you should see results.

Permalink Reply by nmehta02 on April 28, 2015 at 3:16pm

Will be starting Xeljanz at 10mg a day by the end of this month. Just a little about me. I am AU for about 3.5 years. Within about the last 1.3 years I am have some partial natural regrowth of about 30-35% of my scalp hair and 70% of my beard area. eyebrows are patchy and about 50% of my eyelashes.Body hair ( arms,legs, chest,etc) has also come in natrually, but also patchy.

My hope is that Xeljanz will jumpstart the growth process. I guess we will find out in a couple months. Good luck to all. 

Permalink Reply by JHen on April 28, 2015 at 3:24pm
Sounds like you are in the ready to grow phase and may respond to the drug rather quickly. Good luck and keep everyone posted. Are you paying out of pocket and using the copay card?
Permalink Reply by nmehta02 on April 28, 2015 at 8:06pm

Using the co-pay card. I am under Dr. Kings protocol. I will post every 3 weeks on my progress. I should say my "growth" seems to have stalled out and for the past couple months no new hairs are coming in. I hope this medicine will jump start the growth again. 

Permalink Reply by Kat on April 29, 2015 at 10:15am
I hope for all of us that this medication is something that just jump starts to where our hair grows after that. Even if we all just need a "jump" now and again more than once like a car. I wish for all of us that none of us require being on medications forever. It broke my heart to destroy my body with steroids. It's scary to be in a desperate situation where u wish people just understood. I understand u guys even tho i dont know u. There is comfort in this. I appreciate this thread. I feel like history is happening here.
Permalink Reply by AlopeciaDestroyedMyLife on April 29, 2015 at 10:22am

Coming along nicely I think :)

Permalink Reply by Starshine on April 29, 2015 at 10:40am
ADML that is awesome, so happy for you! I know it took longer for you, but that gives me hope as I am only at 2 months and have not seen a lot of activity yet. Are you taking 3 pills a day now and if so, when did you up the dose?
Permalink Reply by AlopeciaDestroyedMyLife on April 29, 2015 at 1:24pm

Yeah I'm on 3 pills a day have been for the past 5 months.  

I'm sure you will respond eventually. 2 months is still early days. 

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