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 singh on April 14, 2017 at 7:05pm
It seems to be with people who have experienced regrowth then stopped have lost all or some of their hair once discontinued of treatment.

So it is more of a treatment than a cure I feel.

Kind regards

Singh
Permalink Reply by Katrina on April 17, 2017 at 8:37am

Update:  11 months from onset of rapid diffuse AU (no prior/family history of alopecia) ::  8 months on Xeljanz :: 3 months on Cortisone injections

Pleased with my progress, even though it feels so slow.  Still thin in the front, but I'd say I am at about 80% coverage.  Brows and lashes are more like 40% coverage.   Scalp shedding 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.

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 allergy shots once a week, and avoiding gluten (I have a known allergy to wheat and rye).

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Permalink Reply by sadele on April 17, 2017 at 10:19am
That looks like good progress... it where I was at about 8 months. At 1 year and a half I had most coverage on my head. What type of allergy shots are you getting? I've suffered from allergies my whole life and I'm considering going this route as well.
Thank you for sharing!
Permalink Reply by Sara on April 17, 2017 at 10:29am
Do xeljanz cut after completion of treatment, hair loss has been observed
Permalink Reply by sadele on April 17, 2017 at 11:53am
When I stopped xeljanz my hair fell out.
Permalink Reply by Niece on April 17, 2017 at 9:24pm

so sorry...that would be harder than losing it the first time around for me.

Permalink Reply by Patchesforlife on April 18, 2017 at 12:14pm
Hi Sadele. Why did you stop xeljanz? Thank you
Permalink Reply by sadele on April 18, 2017 at 2:39pm
I found out I was pregnant with our second child. So I stopped taking the medication.
Permalink Reply by Patchesforlife on April 18, 2017 at 6:54pm
Congratulations are you still pregnant? Can u take it whule being pregnant?
Permalink Reply by sadele on April 18, 2017 at 7:03pm
I had a miscarriage. I started back on the xeljanz on March 24th... I'm expecting growth soon!
Permalink Reply by Patchesforlife on April 18, 2017 at 7:52pm
Goodluck! Keep us updated!!
Permalink Reply by Katrina on April 17, 2017 at 12:41pm

I get 8 shots every Tuesday for environmental allergies, such as pollen, grass, etc. However, my allergist knows about my situation with alopecia and noticed that it happened at a time when I had a very elevated IgE (an immune measure for allergies), and he is hoping these weekly shots will help me recover faster if in fact my alopecia was caused by my anaphylactic shock 2.5 months prior to my hair loss (in other words, not genetic.)

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