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 Return_life on March 14, 2017 at 1:25pm
wow! very nice regrowth.
stupid question but am still gonna ask. if your hair was dark and now blond, what stops you to dye them brown? u afraid that it will shock them and make them fall? are they thick enough?
Permalink Reply by Football fan on March 14, 2017 at 1:48pm
The color looks great on you! Weren't you on 3 pills a day? You were successful cutting it back.I was able to get xeljanz approved for this year so back on it.I still have most of my eyebrows and lashes and do not want to lose them.I hope baricitinib will not be as expensive as xeljanz would love to try it when it gets approved.
Permalink Reply by Suzie on March 14, 2017 at 1:56pm

Starshine your hair looks amazing!  We are all so happy for you.  Thanks for sharing your update cause it really does give us so much hope!  I am on 2 pills a day for about 4 months.  I wasn't AU, just AA but with a lot of thinning.  I was able to get hair extensions to help with the thinning.  My patches are almost all filled in and I know it's going to be a long time before I notice it getting thicker.  Patience is the key!

Permalink Reply by IcarusAlopecia on March 14, 2017 at 4:37pm

Awesome, result!!!

You look fabulous!

Permalink Reply by Christopher's_mom on March 14, 2017 at 8:38pm

You are beautiful! You fit your moniker.

Permalink Reply by Starshine on March 14, 2017 at 4:49pm

Thanks everyone.  Yes, my lashes and brows did grow back, although my brows are not as filled in as I would like. The lashes, however, are even thicker than they were.  The new hair is definitely thick enough and I could dye my hair to its original color, but my dermatologist suggested that I don't.  Even though it has been established that hair color does not effect this disease, he is afraid to cause any type of inflammation and hair color does absorb through the hair follicle.   I can live with the white blonde, it sure beats no hair at all.  I am older and that could be why the pigment did not return as well as others.  I was on two pills a day when I started as I was a slow responder initially.  When I upped the dose to three, my growth took off.  I also take Plaquenil every other day.  Alternating now between 2 and 3 pills a day does not seem to have had any adverse affect.    I hope this has given hope to those who are starting out.  Have patience.  You may have to increase the dose, but don't give up.     

Permalink Reply by Christopher's_mom on March 14, 2017 at 8:41pm

How long were you AU before beginning Xeljanz?

Permalink Reply by Starshine on March 14, 2017 at 8:52pm
I had AA for 3 years, not the patches, but severe thinning which progressed to AU. I was AU for about 8 months when I started Xeljanz.
Permalink Reply by singh on March 14, 2017 at 8:44pm
You look amazing star sunshine!! Didn't you go on Ruxolitinib because you never responded to xeljanz ? and at what did you up your dose to 3 pills a day and what month did you see success?

Thank you

Kind regards
Permalink Reply by Starshine on March 14, 2017 at 8:56pm
Thanks Singh. I never tried Ruxolitinib, started directly on Xeljanz. I upped to 3 pills at about 6 months and have stayed at 3 pills until about two months ago wnen I started to alternate every other day with 2 pills.
Permalink Reply by singh on March 15, 2017 at 7:32am
That's great Starsunshine! Just looking back to the first comments of this thread and it's amazing how far you have come. So happy for you.
Permalink Reply by AlopeciaDestroyedMyLife on March 14, 2017 at 8:59pm

Gorgeous Starshine , I am so happy for you.

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