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 cws on September 24, 2015 at 4:46pm

It did. But it's only one person. They must have other convincing reasons to pursue it.

Permalink Reply by singh on September 24, 2015 at 4:48pm
I see it's good for them people who suffer from that. You think once the data gets released from Dr King and others that they will look into approving it for Alopecia?
Permalink Reply by Chubs on September 24, 2015 at 4:53pm
Dr king told me last week trial results out end of october - his words "this is the definitive treatment for alopecia" worked miracles for my son from conpletely bald to full head see attached pic
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Permalink Reply by singh on September 24, 2015 at 5:01pm
Thanks for the update looks fantastic! The question Is with a lot of people having success with it what will the FDA do...! How many pills your son on a day now?
Permalink Reply by Chubs on September 24, 2015 at 5:07pm
10mg per day (2 pills)
Permalink Reply by DJ88 on September 25, 2015 at 5:38am

Thanks for posting that, those are pretty good results. How long as he been using Xeljanz?

Also, Im wondering what is Dr.King's next step after October? Did he ever tell you?

Permalink Reply by Smudge on September 24, 2015 at 4:57pm
The one I linked to and this one are FDA category phase 2: https://clinicaltrials.gov/ct2/show/NCT02299297

...according to the clinicaltrials.gov website:
glossary
Permalink Reply by Football fan on September 24, 2015 at 5:24pm
Hate to say this but would rather have psoriasis than alopecia they at least have drugs paid for by insurance to try.I have already paid over 6,000.$ was lucky to get covered again till December but will have to put out more money so I can take 3 pills a day since I am one of the unlucky ones not responding to 2 pills.Just think of all the people that can be helped by this drug now but don't have the resources.This disease is a life changer if I got this when I was a teenager I don't know how I would ever have dealt with it.Come January I will have to start paying for the whole thing again doesn't seem fair.Theres a commercial running on TV now of a women embarrassed about getting her hair done at a salon because she has a rash on her neck.Everytime I see it I think I haven't been to a salon in 5 years because I don't have hair to style rather have the rash.Sorry about venting but seems that we have the disease that doesn't seem important!
Permalink Reply by katiegirl on September 24, 2015 at 5:45pm
I would love for it to get approved for alopecia but even if it DOES my insurance says alopecia is completely cosmetic as far as their concerned so they will never cover meds for it. To me them its comparable to getting a face lift. And I've heard other insurances are like this as well. I really agree with you that our disease is the least important when it comes to autoimmune diseases.
Permalink Reply by singh on September 24, 2015 at 7:36pm
That's an absolute joke! Something is wrong with our immune system that needs to be cured. I really hope the likes of NAAF and others can push for this to get approved for alopecia!
Permalink Reply by Hopeful on September 24, 2015 at 9:17pm
Hello, do they not take into account people's mental state? Is this an avenue to consider?
Permalink Reply by T on September 26, 2015 at 4:03am

I don't agree with anybody that this disease is least important when it comes to autoimmune diseases... Alopecia makes you not only susceptible to becoming sick easily but also messes you up mentally and emotionally throughout your life. I would rather be scared of dark places or have sleep insomnia then have Alopecia!

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