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 Giusep on April 22, 2015 at 12:33am
Wow CWS that's is great I am so happy for you. My Fiancés hair is growing back like wild fire. Each day more and more hairs appear. She is on her 4th month at 10mgs a day.
Permalink Reply by gowml on April 22, 2015 at 1:23am

This is amazing cws! Sounds like a good plan on switching to maintenance. Hope this pans out for you and all of us.

Permalink Reply by blondfrog on April 22, 2015 at 11:00pm

what does the minus sign mean -100?

Permalink Reply by gowml on April 22, 2015 at 1:18am

Has anyone managed to get their insurance to cover Xeljanz, if not fully, then partially? The copay card is a good starting point, but it will eventually run out. How are you folks managing without insurance? Any loopholes allowing use of another copay card? For people on trials, what are your options once the trial ends?

Permalink Reply by Starshine on April 22, 2015 at 10:13am
I was wondering this also. My insurance Carefirst, does pay half, but I am concerned about what to do when the copay runs out. I do not know if you are allowed to use more than one card, but I don't think so. It does renew at the beginning of each year until they stop the program.
Permalink Reply by Julie on April 22, 2015 at 1:01pm

Thanks for bringing up the payment, James. I'm trying to figure out any option to make this cheaper once I am off the copay card as well. I don't think there are any loopholes with the copay card and I believe you have to wait a full calendar year from when you first used it (so you can't just get another one in Jan for example). I think the options are trying to get samples from your dermatologist via a rheumatologist friend, using a coupon (someone posted an rx coupon earlier in this thread for a place where you can print a coupon for 50% off one refill but I am not sure if it will work), and trying to go through insurance which seems like an uphill battle.

Starshine- how did you get your insurance to cover half of it? Are you using it strictly for alopecia or do you have RA as well? I am really surprised they are even covering any of it but that is awesome they did!

Does anyone else have any advice for how to get insurance to help cover it? Any success with insurance companies? If so which one and what did you do?

Permalink Reply by Starshine on April 22, 2015 at 2:54pm
Julie, my dermatologist wrote a letter to my ins company and sent photos along with a list of all the prior treatments I tried, which all failed. He told them it was for AU, I do not have RA. They covered it, no problem, according to the coverage I have which pays for half of specialty drugs.

Does anyone know more about other discounts or coupons available for Xeljanz besides the copay card?
Permalink Reply by DJ88 on April 22, 2015 at 3:59pm

Hey starshine,

I was wondering , may I ask(PM) you somethings about Xenjanz and getting it covered?

I want to try this but im hesitant. I dont want to get it using the co-pay only to have it work and then stripped away from me.  

Permalink Reply by Starshine on April 22, 2015 at 4:02pm
Sure, be glad to help if I can. We are all in the same boat.
Permalink Reply by gowml on April 22, 2015 at 4:59pm

@Starshine, were the photos showing the progress you had made on Xaljanz?

Permalink Reply by JHen on April 22, 2015 at 4:57pm

Can anyone give me some insight. My doctor has called the medication in, and insurance requested a PA (prior authorization). My insurance keeps denying the drug and according to what I have heard from the pharmacies, I cannot use the copay card without a PA....Can everyone else who has used the copay card give me some insight.

Thanks!

Permalink Reply by gowml on April 22, 2015 at 5:02pm

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