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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Related Post on Alopecia World:  

Xeljanz / Tofacitinib

Olumiant

Jak Inhibitors

 

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Permalink Reply by sultan h on October 17, 2016 at 4:59pm
Sounds great, I think this medicine for long term . That's what I heard , is your eyelashes grow?
Permalink Reply by James 2me on October 17, 2016 at 7:24pm
Yes Sultan full regrowth on the lashes and eyebrows. Facial and body full regrowth. Scalp Takeing it's time. Universallis for 13 months before starting Xelljanz
Permalink Reply by Othors1 on October 15, 2016 at 2:17am

Hi, thanks. My friend really need it.

Permalink Reply by Xeljanzmiracle on October 16, 2016 at 12:32pm
Singh, I lost my other phone that had the What's App on it. I left it in an Uber car on the way to pick up my car from the mechanic on Friday. That's why you haven't heard back from me. Private message me. I'm going to try to add What's App to another number I have.
Permalink Reply by Return_life on October 18, 2016 at 10:58pm
I had very slow progress... and for the last 3 months no more new hairs.
My dr advised me to stop the xeljanz therapy. Unfortunately i am a non responder.
Permalink Reply by Football fan on October 18, 2016 at 11:51pm
How long did you take zeljanz for and what strengths? I'm not a responder either except eyebrows went from 50 to 80 percent got some more Hair on my legs and arms.I Never lost eyelashes or facial hair but scalp hair stayed the same.I had such high hopes because I was not AU but that didn't make a difference.Hopefully they will find something that works for us non responders.I am hoping maybe Barcitinib the new JAK 1 2 coming out soon.
Permalink Reply by sadele on October 19, 2016 at 9:04am
I was responding well, almost full head of hair and 50% eyelashes - no eyebrows - but all body hair returned.
However, I lost the lashes and my scalp hair is falling out/shedding. Mostly on the top and front of my head.
This is a picture of the left front side. It actually looks like this all over the top when you move my hair around.
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Permalink Reply by Suzie on October 19, 2016 at 10:46am

How long have you been on the Xeljanz when you noticed hair coming in? and then when you noticed the shedding?

Permalink Reply by sadele on October 20, 2016 at 9:28am
I've been on Xeljanz for 15 months. I started to get growth around month 7 but it was very slow. I was AU for 7 months when I started Xeljanz.
The shedding began in August, almost 3 months ago.
It could be stress, food or anything that is triggering my shed. I just don't know.
Permalink Reply by Return_life on October 19, 2016 at 8:45pm
I took xeljanx for 7 months in total.
1st month 5mg a day,
4 next months 10mg a day
2 months 15 mg a day.

Yes it is sad for non responder like us. I hope also baritinib will help us. But my dr told me these 2 biologics work similarly so not a lot of chances...
Permalink Reply by strawberry on October 19, 2016 at 8:50pm

Maybe you need 15 mg a day for at least 3 or 4 months? I read that people take around that time to respond, so perhaps your 5mg and 10mg weren't strong enough to kick start things.

Permalink Reply by Jcortez05 on October 19, 2016 at 11:43am
My hair was thinning so I shaved it 2 months ago .. it's growing back and not falling out anymore here is pic from yesterday .. it's slowly thickening up .. it was much thinner 1 month ago
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