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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Replies to This Discussion

Permalink Reply by Xeljanzmiracle on December 28, 2015 at 8:50am
Congratulations Joao on hair regrowth at 3 weeks! Yes, unfortunately, the hair will likely fall out again if you discontinue treatment. Xeljanz is not a permanent cure. We might have to take it, or some other JAK inhibitor for the rest of our lives. That's why we NEED the cream version, which would be less invasive (safer) for our entire system, and we need Xeljanz to be approved by FDA so the cost will go way, way, way down. We want insurance companies to cover it also.
Permalink Reply by Joao Piva on December 28, 2015 at 8:56am

Well, at least there might be a chance of reducing the doses right?  The drug is to expensive.

Thank you for the reply.

Permalink Reply by AlopeciaDestroyedMyLife on December 28, 2015 at 9:00am

It is highly likely the hairs will fall out again once Xeljanz is discontinued. The odds however are not 0% as there is always the chance the hair follicles will remain in normal action despite stopping Xeljanz. 

I know 1 pill a day is enough to sustain my hair for me and once I have 100% regrowth I will decrease even further until I find an optimum maintenance dosage. 

Permalink Reply by Joao Piva on December 30, 2015 at 5:22am

That looks a great strategy.

Permalink Reply by Xeljanzmiracle on December 28, 2015 at 9:39am
You are welcome. Anything is possible. A lot of folks on here have actually increased their doseage to get initial or better regrowth. When I went up to 3 a day in November (month 4) my scalp's resistant bald spots started filling in. A lot of it was in the initial, transparent, blond spiky stage, but its starting to turn dark now. Its an AMAZING FEELING to have hair all over my scalp now when there was absolutely NONE for 5 years! I will probably reduce back to 2 a day when I have full regrowth on my scalp, eyelashes and eyebrows. One woman on here reduced to 1 a day and her hair started falling out again. I told a friend yesterday, that I'm turning Sikh with my hair. I don't think I will ever cut it again. Maybe a teensy, teensy trim one day. I'm serious. I appreciate and value every single new hair on my body. It was a long, prayerful 5 year wait for this miracle.
Permalink Reply by marisa on December 28, 2015 at 11:18am
Wow joao i just saw your pic and that is amazing and so happy for you. At the beginning of treatment did you not have eyebrows and eyelashes? Have they also grown? How much is your xeljanz in brasil?
Permalink Reply by Joao Piva on December 28, 2015 at 11:48am

Hi, sorry for the delay.

I started the treatment without a single hair in my whole body.  Eyebrows went back first and Eyelashes were back only after 5 months, but are very strong and long now.

My beard is full and I had to buy an eletricshaver back. rsrsrs.  Ah...  I had a big Nail problem, now all nails are beautiful and growing strong.

The price here in Brazil is about 815 Us$.  

Permalink Reply by Joao Piva on December 28, 2015 at 1:00pm

Eyelashes and Eyebrows.

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Permalink Reply by singh on December 28, 2015 at 1:28pm
Amazing! What alopecia did you have ? AU?
Permalink Reply by Joao Piva on December 28, 2015 at 1:32pm

Yes, AU.

Permalink Reply by Joao Piva on December 28, 2015 at 1:36pm

Since 2007 with AU.

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Permalink Reply by singh on December 28, 2015 at 2:21pm
Cheers ,So has your hair grown on your scalp ?

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