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 singh on December 28, 2015 at 5:02pm
You just download it online Cws then get a prescription from your doctor then take both to a pharmacy and they should ship the xeljanz to you.
Permalink Reply by cws on December 29, 2015 at 10:03am

Thanks I will look into that...

Permalink Reply by mattia r on December 29, 2015 at 4:36am
Permalink Reply by Jckah on December 29, 2015 at 9:03am
Today marks 6 months.
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Permalink Reply by Nicolas on December 29, 2015 at 10:00am

wonderful only 6 months !how many pills?

are you putting toppik ? 

Permalink Reply by Jckah on December 29, 2015 at 2:12pm
Thanks! I've been on two pills a day, cortisone injections every 4-6 weeks, and I included rogain around the 3 month mark which really seemed to jump start the growth.
Permalink Reply by Nicolas on December 30, 2015 at 11:16am

Thank You :-).

Permalink Reply by Rach1992 on December 29, 2015 at 9:57am

Is anyone else concerned that Xeljanz lowers the immune system's ability to fight infection and that you have to stop taking the drug in your 50s/60s because the risk for contracting a life-threatening illness becomes so much higher ? I want to travel a lot in my life and work out a lot and I don't want to lower my immune system at all... I want to feel as excited about this treatment as you guys are but I can't bring myself to accept the risks. 

While you guys may not have tuberculosis or whatever other diseases you may contract while using Xeljanz, don't you think it's a bit early to consider it safe? Even with Stanford and Harvard saying it's "safe" I still see the risks and I don't know if having hair back is worth it. Previous studies of Xeljanz has deemed it not worth the risk even for Rheumatoid Arthritis...

Permalink Reply by cws on December 29, 2015 at 10:01am

Your points are valid...it's the same thought process that everyone must go through when taking any medication. It's a risk/ benefit decision everyone has to make for them self.

Permalink Reply by Nicolas on December 29, 2015 at 10:02am

If i remember there are a lot of people whit more of 50 years and all are using ...go to a immunolgy doctor ask how many patinents use similar drougs and have 70 or more...the drougs is sure and safe noone side effect at the moment and are a lot of guys to use not 3 or 4 ...the we must be positive cuase i'm sure in months they sell the cream that will be a lot of safer.

Permalink Reply by Rach1992 on December 29, 2015 at 10:23pm
Yeah I am really excited about the cream. The cream to me is worth trying. I hope they bring that out soon becsause i would easily settle for a crewcut and putting cream on my head every day forever. I am so lightskinned that everyone just assumes I have cancer. I would love to not have the judgemental stares.
Permalink Reply by singh on December 29, 2015 at 11:48am
The thing is there are always gonna be potential side affects to any drugs. Your points are valid and everyone should consider those points but also have proffesional supervision whilst on xeljanz. It can leave you open to infections but I feel more people die from smoking and alcohol then they do from certain prescription drugs. Unfortunately this world runs on greed so even tho millions have died from getting cancer from smoking and alcohol the government will still approve it as it makes a lot of money. It's just a way to think about things. I personally think alopecia is a disease and although they say it can't harm I believe every disease needs to be treated and cured. The good thing is the progress on finding a treatment/ cute is on the rise.

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