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 Rascalx2 on January 4, 2019 at 4:20pm

How many mgs?

Permalink Reply by Frida Rupert on January 4, 2019 at 4:23pm

Hi Jc, you may need to up dose and steriod pulse for a few months. Toficitinib is a great “keeper” of results but sometimes you need a bigger dose and a short stint of steriod pulsing to get it to take off.

i have had full regrowth- everything back (I was AU), and my hair is quite thick now (thicker then before but I think my extra care is partly why), but I got nothing on 10mgs, when I upped to 20 and did three months steriod pulsing I got it all back, I’ve weaned off the steriods about 9 months now with no shed or hair loss. 

Permalink Reply by Cocopuffz17 on January 4, 2019 at 8:44pm

That’s awesome to hear of no relapse! I hope it stays! 

Permalink Reply by Frida Rupert on January 4, 2019 at 11:50pm

I’m still on the toficitinib though- from what I can find if you get it back then you need to stay on it or there is a reasonable possibility of relapse. That’s said coming off the steriods weren’t an issue at all and my hair is really probably thicker then before (it’s also curly- so weird - it was dead straight before) but I do take very good care of it, biotin, growth shampoo etc and no chemical treatments. I think if you do respond it is a matter of fiddling with doses when flares come and go, and perhaps adding steriods now and then if it’s really kicking off. Many have successfully weaned down to a very minimal dose with no relapse.

Permalink Reply by Cocopuffz17 on January 5, 2019 at 2:45am

Ooo! Well that’s good to hear. The lower dosage the better for the long term, after the results of course 

Permalink Reply by Nat on January 4, 2019 at 9:17pm

Hi, at what point did you up to 20? What dose are you taking now to keep your hair? Thanks 

Permalink Reply by Frida Rupert on January 4, 2019 at 11:53pm

hi Nat,

at month 3/4- my results were underwhelming (as in not really happening) so steriod pulse and 20 mgs got me full growth, after 3 months steriod pulsing then one month weaning down off the steriods, then I stayed on 20 til recently and now drop one day of three to 15 mgs. I hope to get to 10 mgs in the next 6 months (no rush, very gradual) and then I’ll see how I go. Just make sure you do bloods and look after your health.

Permalink Reply by Nat on January 5, 2019 at 8:30am

Thank you Frida, I am the first week on Tofacitinib at 10. Trying to figure out if O need to increase from the get go. Thanks  

Permalink Reply by Frida Rupert on January 6, 2019 at 10:16pm

I’d wait til at least month 2 or 3. Many people get results on 10 and if you can get results on the lower dose all the better!

Permalink Reply by Newjack on January 6, 2019 at 4:52pm

Frida,

I am taking prednison right now for another issue 20mg 1x a day for 5 days. Would that be considered Steriod Pulsing or does it need to be a higher dose?

Either way, any little bit of immunosuppressent right now helps lol.

Permalink Reply by Frida Rupert on January 6, 2019 at 10:15pm

It would help some I would think. The pulsing tends to be higher dosages for short times - so like a huge dose once a month or a few times a week. I know what you are experiencing is terrifying - I honestly believe it’s your body just recouping from surgery, and in a month or so the meds will level out and you’ll be back to full growth. We are so traumatised by our experiences though- so totally understand how upsetting this is. 

Permalink Reply by Carlie on January 6, 2019 at 3:49pm

Frida, are you still using Minoxidil? 

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