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 Suzie on September 28, 2017 at 12:35pm

No headaches for me....just extreme exhaustion.  I'm trying 1 pill a day and will take it at night and I want to see if I notice a difference in my hair, the exhaustion and my arthritis.  

Believe it or not, exercise does help, so if you can exercise, please try that to help with the exhaustion.  I honestly need to keep moving or doing something cause the moment I sit down, I want to sleep and throughout the day at work I am just plain exhausted that I can't stand it!

Permalink Reply by Lindzzej on September 28, 2017 at 12:51pm
I'm experiencing some major fatigue myself...unfortunately I don't feel good enough to go to the gym anymore so I'm figuring things out as I go.
Permalink Reply by Football fan on October 1, 2017 at 2:33pm
No fatigue here or colds.Xeljanz just doesn't want to work for me.Im hoping The jak 1 and 2 is what I need but Barcitinib is taking forever to get approved.
Permalink Reply by IcarusAlopecia on September 29, 2017 at 2:03pm

Hey Suzie,

I haven't experienced any exhaustion no more than usual. I feel these days, everyone is exhausted, lol. 

I'm really good about getting 8 hours of sleep (at least Monday-Thursday) and I exercise every morning. I don't know if those things help. When I don't get to bed at say 10pm on a work night, my morning is thrown off and i feel hungover.

Getting into a routine is hard but for me at least, keeps my energy in balance.

I hope to reduce to 1 pill by December if my growth remains steady.

Permalink Reply by DJ88 on September 29, 2017 at 6:33pm

Hey IcarusALopecia

I was wondering, what dosage did you start Xeljanz on and did you go up at all after awhile?

Permalink Reply by IcarusAlopecia on September 29, 2017 at 6:40pm

Hi DJ,

I started on the standard dose of 2 pills per day.

I never went above that. I started to respond rather quickly in about 5-6 weeks. 

My doctor is the one that suggests that if by December all is good then to drop to 1 pill per day.

Permalink Reply by DJ88 on September 29, 2017 at 7:30pm

oh ok nice, and what was that like 15mg a day or 10mg?

Permalink Reply by IcarusAlopecia on September 30, 2017 at 9:03am

The standard dose is 5mg twice per day.

Permalink Reply by Scott James on September 30, 2017 at 6:03pm

Hi IcarusAlopecia,

Do you take the pills with or without food ?

Just wondering if that may have an impact on the amount/concentration of Xeljanz that makes it into your system.

Permalink Reply by IcarusAlopecia on October 2, 2017 at 4:07pm

With food but i don't think it makes a difference, really. I also drink alcohol. I know you're not supposed to but I'm a social person and go to bars, parties, etc. I usually have anywhere from 2-4 glasses of wine per week.

Permalink Reply by Villa fan on October 2, 2017 at 4:03pm

I would suggest that you ask your doctor about maybe going 2 pills one day, 1 pill the next.  From experience, with tapering the dose to that level, I started to suffer loss.  On the plus side it came back when I went back to 2 a day.

Permalink Reply by Christopher's_mom on September 30, 2017 at 10:15pm

Your hair looks great, Icarus.

Curious...Did you suffer any hair loss when you had to go off the meds for the two months?

Please keep us posted as you reduce to one pill a day. I haven't heard of anyone doing that. My son may be next for the reduction.  That part still seems experimental.

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