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 Christopher's_mom on April 11, 2017 at 8:37pm

Not a good idea to take dog meds.

My sister works at a vet clinic, got a cold or allergies, calculated her weight and prescribed herself a dog dosage of meds.

She ended up flat on the couch for hours.

Not safe.

Permalink Reply by alopecia_exist_so_god_doesnt on April 11, 2017 at 7:48am

thank you for reply 

 

Permalink Reply by 2above on April 13, 2017 at 1:19pm

I am at my wits end I have been to see Dr. King without any luck. He did not do an examination of my scalp. He took a verbal health history and stated that he could not include me in his study. I reached out to him repeatedly in desperation in the year that followed with a reply that basically dismissed my concerns and plea for help and ended with "good luck." I have tried a nutritionist a herbalist etc. No help still bald. 14 years and counting. Where can I get this medication from besides D. King???????

Permalink Reply by Alop88 on April 13, 2017 at 6:48pm

Where do you live? If you're near NY you can go to Dr. Lindsey Bordone she's accepting new patients and is a great doctor.

Permalink Reply by 2above on April 14, 2017 at 3:22pm
I live in Philadelphia but will contact the Dr.you suggested thanks
Permalink Reply by Patchesforlife on April 14, 2017 at 11:41am
Why didnt he accept having you?
Permalink Reply by 2above on April 14, 2017 at 3:22pm
He said he had limited spacein his study did not accept me or my best friend
Permalink Reply by sadele on April 14, 2017 at 3:30pm
Is this a xeljanz study or a study for a different drug?
Permalink Reply by Jcortez05 on April 14, 2017 at 3:35pm
DR bordone is such a nice dr so sweet only thing is that she is expensive ! She didn't accept my insurance so I paid cash for the 1st visit .. a few hundred $
Permalink Reply by Sara on April 14, 2017 at 6:26pm
Do xeljanz cut after completion of treatment, hair loss has been observed?
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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