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 Frrankie on June 9, 2017 at 6:39pm
Thanks, I stumbled across it on a YouTube channel on drinks to lose weight. I was surprised so felt I would run it past you guys.
Permalink Reply by Davy on June 11, 2017 at 12:40pm

Hi guys just a quick note to report about my progresses with Xeljanz.

I took 5mg per day for about one year, and the results were quite amazing.

I almost had all my head hair, full eyebrown eyelashes and facial hair.

I took an antibiotic as suggest by Dr. King for side-effect acne. During that

month I stopped Xeljanz to see what would have happened. As result,

in less than a month I lost again all my head hair and a very small spot

on my eyebrow, which is now (after four month of medicament as usual)

start to grow up again. My head hair are far from being as they were 

before I stop for that month. So, if you wonder what will happen if you stop

even for one month, think twice before doing that. My first year of medicament

I was very relaxed, but then I went back to normal demanding stress of a PhD

and the situation worsen terribly. Now I am really sure that stress trigger

alopecia. Exaustion is the signal to the hair follicle to switch off. I am not

sure how to stop that though.

Permalink Reply by Return_life on June 11, 2017 at 1:01pm
me too I have lots of acne with xeljanz especially when I increase the dosage.
thanks for letting us know.
Permalink Reply by Lindzzej on June 11, 2017 at 3:14pm
Davy,

What antibiotic are you on for the acne? Doxycycline? Thats what my derm gives me, though I take it just occasionally while on Xeljanz, I haven't been off it because of the slight use of the Doxycycline. Just wondering what he had you on for the acne?
Permalink Reply by Davy on June 11, 2017 at 3:46pm

antibiotics were Cephalexin 500 mg twice daily for 4 weeks

and sorry for the mistake, my Xeljanz dose was and still is 5mg x 2 x day.

I am not sure if what happens was for the antibiotics, because I stopped

Xeljanz or for both reasons.. Anyway, the antibiotics worked well,

I have no acne anymore...I had an infection with the acne, was quite visible

and painful. Hope things will be back as they were, I really don't mind my head

hair, I do mind all the rest....

Permalink Reply by singh on June 12, 2017 at 9:58am
Hi Davy, thanks for the update. Are you back on xeljanz to regrow your hair ?
Permalink Reply by Patchesforlife on June 11, 2017 at 5:00pm
Hi all

On the Naaf website it says that NAAF will have meeting with FDA, is this goood news? When do you see treatment being officially out there?
Permalink Reply by singh on June 12, 2017 at 10:00am
Hi could you post the link ?

Thank you
Permalink Reply by Patchesforlife on June 12, 2017 at 1:14pm
Permalink Reply by Patchesforlife on June 12, 2017 at 1:16pm
Thanks Singh. I didnt really quite get what it means. But i think it should be good news?
Permalink Reply by Frrankie on June 12, 2017 at 1:33pm
I was sent a servay about my experience with Alopecia. They may use some of that information in there discussions on Alopecia and the FDA. I personally don't think they will use my stuff but I did submit something. I definitely made it clear it is more than a cosmetic inconvenience.
Permalink Reply by Patchesforlife on June 12, 2017 at 2:03pm
Thats great!what is this meeting about? What will fda decide having held this meeting?

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