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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Replies to This Discussion

Permalink Reply by Katrina on March 17, 2018 at 7:39am

Oh no, Katie :( Im sorry you are having trouble... thinking of u <3  

Permalink Reply by Kathy on March 17, 2018 at 12:37pm

Oh Katie That's really tough. A week or so Carlie spoke about a trial going on now for CTP-543 that she is participating in. I contacted Concert Pharma as well as my Northwestern doctor as that office is part of the US study. She said I wasn't a candidate as you need to have 50% hair loss and right now I do not. 

Anyway, my point is if you decide against Xeljenz (which I was also not a candidate for) there are supposedly something very promising coming down the pike. 

We know how you feel, it just sucks! Hang in there.

Permalink Reply by katiegirl on March 17, 2018 at 3:07pm

Thank you. Is CTP-543 another jak inhibitor? I just didn’t like the long list of side effects with xeljanz and although I took it for over a year it always made me nervous. What are you doing for your hair right now if you cannot take xeljanz? 

Permalink Reply by Kathy on March 21, 2018 at 9:56am

I'm new to these meds so I don't know. I'd look at the Concert Pharma site. I emailed the trial contact person and got a response the next day. 

Permalink Reply by kevin on March 16, 2018 at 10:05pm

hi will you take over xeljanz. I am on xeljanz for a month and I have regrowth beard hair eyebrows. every week I see new hairs and hair. I am at 10mg day I will stock up in Istanbul I am French. a year ago i was a il2 low dose i had a little push back my nails in better condition. I think I'm reacting so fast with low dose interleukin 2 that has put my immune system back in better shape if I have a complete answer. I would ask my doctors to repeat a course of treatment to maintain the hair. if it is possible because it is still trying in phase 3. I had regrowth for more than a year that but never happened so i think il2 can be a long term solution to maintain the hair.

Permalink Reply by bibby on March 17, 2018 at 6:49am

What is the latest price of Xeljanz in Turkey Kevin ? 

Permalink Reply by cmdd20 on March 20, 2018 at 2:14pm

I received an email from NAAF that this study is still looking for participants:

https://www.naaf.org/clinical-research/a-study-of-ati-50002-topical...

Permalink Reply by Toxicmosquitoaf on March 21, 2018 at 8:40am

6 month progress on X

Permalink Reply by Kathy on March 21, 2018 at 9:53am

wow! fabulous!!!

Permalink Reply by Carlie on March 21, 2018 at 12:03pm

That's wonderful!

How much are you taking a day?

Permalink Reply by Frida Rupert on March 22, 2018 at 9:48pm

Great progress! 

Permalink Reply by Newjack on March 22, 2018 at 8:02am

I think I have about 2 weeks left on my meds which would put me at around 10 weeks on Xeljanz. 

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