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 Frida Rupert on December 14, 2017 at 4:52pm

Slowly. Think it's starting to speed up a bit - I'm now fuzzy all over my head (to the non-alopecian it's still bald but to the alopecian it's fuzzy). My eyelashes have had the best response and are growing back really well and there are hairs popping up on my brows and arms. I think the hardest thing is being patient. And managing expectations- I've set my goal on having a pixie length hair style by next Xmas as my long term goal and to try and assess change monthly as opposed to daily. I am steriod pulsing at the moment to speed things up a bit and get things going. From what I have read of others experiences and photos it seems that getting the growth started can be the big hurdle, once the growth starts it becomes a bit faster/easier.  I'm really hoping you get some great (quick) results. Waiting is the hardest part!

Permalink Reply by Frrankie on December 14, 2017 at 5:01pm

So tell use again how long have you been without hair.

Permalink Reply by Frida Rupert on December 14, 2017 at 5:10pm

I got my first patch December last year 2016. Was AT by July 2017 eyelashes/eyebrows/ body hair gone by August/September. Started xeljanz end of August- got some body hair back that month, with lashes starting about a month ago and fuzz really getting started in my scalp in the last few weeks. I realise some people have had it much worse and am trying to be as patient as I can. This disease is such a nightmare, in how it plays with your head, never knowing if it's going get better or not....

Permalink Reply by Shad on December 14, 2017 at 5:44pm

Waiting is the hardest part that's true but when comes with hope make it easier!!

hope to hear good news soon!

Permalink Reply by MavisKwok on February 21, 2018 at 7:23pm

Hi shad

do you know how to check the drug from turkey is real or not?

I find a man who can help me buy from turkey and ems Xeljanz for me.

Thanks

Permalink Reply by Frida Rupert on December 13, 2017 at 10:00pm

Hi guys,

any thoughts or knowledge anyone has re using Low dose naltrexone alongside tofacitinib? I have hashimotos disease as well as alopecia and have read it's very good for hashimotos but don't want it to counteract the xeljanz.... any experiences out there?

Permalink Reply by Return_life on December 14, 2017 at 4:26am

https://sites.google.com/site/dudleyslowdosenaltrexonesites/home/dr...

Personally I would not mix anything with xeljanz if you are still in the early phase... just be patient and embrace these little hair growing.

Permalink Reply by Frida Rupert on December 14, 2017 at 2:35pm

Thanks Return to life

Wise advice! Patience is clearly not my strength LOL! I'm hoping I have enough hair to be wig free by next Xmas! 

Permalink Reply by Carlie on December 16, 2017 at 7:03pm

It wouldn't hurt to add the LDN. It's very safe and actually good for you. It tricks your body into producing more endorphins while you sleep. There's a ton of articles about it. 

Permalink Reply by mtran2000 on December 17, 2017 at 5:53am

I just started taking LDN. Really no downside to using it.

Permalink Reply by Return_life on December 17, 2017 at 8:15am

In combination to xeljanz?

Permalink Reply by Lindzzej on December 17, 2017 at 10:18am

What is LDN?

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