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 Nat on January 15, 2019 at 12:40pm

Hi, how did you get Xeljanz with a Co-pay card? I got one from my derm. but my insurance still blocked it. I have Cigna. Thanks

Permalink Reply by Christopher's_mom on January 15, 2019 at 5:01pm

I Googled "Xeljanz Co-Pay card" and was led to the website. It was so simple online that I thought it couldn't possibly be real. They texted me the the expiration date, BIN #, Group # and Member ID #.

I gave that info to my pharmacy and they inputted that info. The first time it was declined and then they submitted a code and it went through.

It is worth $15,000/year so I don't understand why an insurance company would decline that.

Permalink Reply by Nat on January 15, 2019 at 6:04pm

I have a co-pay card, my pharmacy tried to get it thru the system. But since it's a co-pay savings card - insurance has to approve. My insurance - Cigna - denied. 

Permalink Reply by Carlie on January 15, 2019 at 12:48pm

I found that even if my insurance covered it (I have medicare) the co-pay would be more than I could afford. 

Permalink Reply by Christopher's_mom on January 15, 2019 at 5:02pm

The co-pay does not work for people who are on government insurance programs for which medicare may be. However, Pfizer does have a hardship program for people who cannot afford the medicine.

Permalink Reply by Theresa on January 15, 2019 at 12:49pm

Hi Christopher's_mom - thanks so much, this is helpful. I'm afraid that as it stands right now, my derm is leaving it up to me to write the case.  I see her next week and I will insist that she take pictures and help me with the case. CVS Caremark have been the ones dispensing me the meds and I would get the e-mails and texts asking me if I needed them refilled on a monthly basis, just like clockwork.  Sadly because this all transpired yesterday, I received two nice little e-mails and texts from CVS saying that my account was on HOLD. I will try your approach.

Thank you!

Permalink Reply by Christopher's_mom on January 15, 2019 at 4:55pm

In my opinion, it is your doctor's responsibility to work to get you approved. Having said that, my son's physician asked him to write a personal accounting of the effects alopecia is having on his life to include with his photo and appeal letter. And that we did.

Let me know if it works. We got declined twice with the co-pay card. It needs to be inputted properly at the pharmacy.

Permalink Reply by Mashloum on January 1, 2019 at 1:38pm

Hi everyone, and happy new year

as update for my son Anas (9years) and after 9 months of using Xeljanz with acceptable Lab results (TPO results decreased from 27 to 12.3 and acceptable results should be less than 5.6)

Permalink Reply by Mashloum on January 1, 2019 at 1:41pm

Permalink Reply by Mashloum on January 1, 2019 at 1:42pm

Permalink Reply by TC on January 1, 2019 at 5:58pm

Happy new year Mashloum.

Congratulations to you and Anas. Hope he realizes what a great father he has. 

All the best for 2019 and god bless.

TC

Permalink Reply by Mashloum on January 1, 2019 at 11:11pm

Happy new year for you as well

many thanks and I wish all of the group member all kind of the best wishes for the new year with all successful and achievements 

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