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 Nicolas on May 15, 2017 at 4:50pm

what happened to guy opened this file? is him good???

Permalink Reply by Katrina on May 16, 2017 at 12:48pm

Hey everyone... just sharing my monthly update:

12 months from onset of rapid diffuse AU (no prior/family history of alopecia) ::  9 months on Xeljanz :: 4 months on Cortisone injections

Pleased with my progress, even though it is slow.  Still thin on the top of my head, but I'd say I am at about 85% coverage.  Brows and lashes improved a lot this month... but still only around 50%.  (You can see them in the photo of me looking down... I have lots of mascara on so they look pretty thick... & you can see the left eye is much better than the right eye).   Scalp is still shedding, but has slowed... only finding about 10 hairs on my hands after shampooing.  Blood work still normal.   However, weight gain, exhaustion, and frequent colds are all still issues for me.   Still on 20mg/day for now (have been for about 3 months, prior to that I was alternating 15/20mg for 3 months).

Other things I am doing in addition to Xeljanz and Cortisone shots: using Women's 5% minoxidil once a day, rubbing essential oils on my scalp once a day, taking Hair Skin Nails vitamins (Biotin) twice a day, using TheraDome Laser Helmet a couple times a week, using RevitaLash and RevitaBrow serums once a day, getting regular allergy shots, and avoiding gluten (I have a known allergy to wheat and rye).

I accidentally ate a walnut a few weeks ago... which was very scary, as my doctors and I believe an allergic reaction to a Hazelnut in March 2016 is what caused my alopecia.  My reaction this time wasn't that bad, and I was able to get to a hospital quickly for the Epinephrine... really hoping this incident doesn't affect my progress...trying not to think about it.

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Permalink Reply by Frrankie on May 16, 2017 at 2:16pm
Good to see results.
Permalink Reply by Rascalx2 on May 16, 2017 at 4:33pm
So strange why right side of brows and lashes are weaker than left side, i have very fair white eyelashes on left but none on right
Permalink Reply by Return_life on May 16, 2017 at 6:20pm
thanks for posting this.
do you think the cortisone shots helped? u get them in the scalp? if u get them in a bald spot do you see regrowth in this spot?
Permalink Reply by Katrina on May 16, 2017 at 11:08pm
I do think the shots helped to kick-start some growth. Ive been getting them on my scalp and brows every 5 weeks or so. Two weeks after a round of injections I notice new hairs. It has left me some dimples, though. The dimples in my brows went away but I still have about 6 large dimples on my head. I think they use a higher consentration on my scalp than on my brows.
Permalink Reply by Sara on May 18, 2017 at 9:37am
I was seven months xeljanz tablets eat, but growth is very slow day for fifteen mg tablets eat
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Permalink Reply by LIU CHUNXIU on May 18, 2017 at 7:07pm
may i ask a question? will we eat xeljianz forever? could not stop it or reduce it slowly and slowly?
Permalink Reply by Return_life on May 18, 2017 at 7:59pm
yes xeljanz is forever. all your life
Permalink Reply by singh on May 19, 2017 at 6:40am
I think a lot of people responded and 7 months on xeljanz and then the growth excelled from there. And I don't think it is forever as new treatments are on the arise including stem cells which might cure alopecia but as being on xeljanz it is a treatment and will need to be continued untill another treatment becomes viable.

Kind regards

Singh
Permalink Reply by Sara on May 27, 2017 at 9:00am
Hi Is the University of Chicago for the treatment of alopecia on stem cell work?

Is the cure of alopecia on the way?
Permalink Reply by singh on May 27, 2017 at 9:10am
http://www.medicalnewstoday.com/articles/317634.php

Very interesting read and discovery.. Could be the reason of why alopecia is active...

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