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 Patchesforlife on December 9, 2017 at 12:44am

anyone here from Chicago know someone who prescribes xeljanz? thank you so much

Permalink Reply by Christopher's_mom on December 12, 2017 at 9:46am

Northwestern has a hair loss clinic and is currently doing research on a drug other than Xeljanz. It's double blind so only a 50/50 chance of getting the drug but it would be free since it's a research trial. My son sees Dr. Vanderweil and is not a part of the research and is successfully on Xeljanz. There is another doctor who sees alopecians but I can't recall his name.

Northwestern is very well designed in that you don't need to step outside once you park in their parking deck. Dr. Vanderweil also is very aware of the hoops and hurdles one must go through to get insurance approval and is good at facilitating the process.

And lastly it's located in a great area.

Good luck!

Permalink Reply by Lindzzej on December 12, 2017 at 10:57am

I was wondering if you knew what other drug Northwestern is currently doing trials on?

Thanks

Permalink Reply by Christopher's_mom on December 12, 2017 at 12:50pm

I didn't ask. But my son has an app't Monday and I'll ask him to ask the dr...hope he remembers...he just turned 18 :-/...I'll report back and hopefully with an answer better than, "I'm sorry but he forgot to ask".

Permalink Reply by Patchesforlife on December 12, 2017 at 11:57am

thank you so much. Does Dr Vanderweil have any vlue when xeljanz will be fda approved for alopecia?

Permalink Reply by Christopher's_mom on December 12, 2017 at 12:52pm

He said there are many interested parties in finding a cure and things are moving fast. He didn't say anything about FDA approval for Xeljanz, however.

In my opinion, a cure for male pattern baldness would be a financial windfall for whoever gets there first, and finding a cure for alopecia could be the lead to that one.

Permalink Reply by Shad on December 11, 2017 at 8:22pm

Hi everyone, I have alopecia from my childhood and going to start xeljanz very soon, waiting to get it from Turkey, hope everything goes well:)

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Permalink Reply by Hopemom on December 11, 2017 at 8:40pm

Good luck! 

Permalink Reply by Frrankie on December 11, 2017 at 8:46pm

Good luck, it most likely will be a slow walk. Try not to get discouraged. Sorry you have to go the Turkish rout. I know nothing about the Turkish product just assume it takes more effort.

Permalink Reply by Shad on December 14, 2017 at 5:42pm

Thanks Frrankie! 

Im really hoping my hair regrow fast, I have no hair about 10 years now but last year I started prednisone and in 3 months I saw lots of patches started to grow and xeljanz is more stranger than prednisone,  So let's hope:)-

Permalink Reply by Frida Rupert on December 11, 2017 at 11:09pm

Good luck Shad! Hopefully you get a great response. Be warned it can take time though but try not to get discouraged. The first six months is trial and error in my experience with dosage and responding status. Some people are much quicker then that and others slower. Let us know how you get on.

Permalink Reply by Shad on December 14, 2017 at 4:40pm

Thanks Frida!

hows your treatment going so far? How much hair regrow? 

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