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 Football fan on September 29, 2015 at 9:41pm
I order xeljanz from a pharmacy now from Pfizer I'm hoping the increased dosage will work.Best to talk to the Doctor that's treating you now my Dermatologist would not prescribe it but my Endocrinologist did. Then get the Xeljanz copay card if your insurance won't cover it.
Permalink Reply by Sp06 on September 29, 2015 at 10:09pm
Thank you so much for replying. If my dermatologist doesn't prescirbe it to me, I will consult with my endocrinologist, but what if they refuse to prescribe it as well? And if they do prescribe it, what do they prescribe it for since xeljanz is not approved for alopecia. Also, will my age affect my chances of getting xeljanz, I'm currently 16.
Permalink Reply by Football fan on September 29, 2015 at 10:28pm
I don't know what age they will start prescribe it for but I think you have to be at least 18 or 21 to use the copay card.I think there are some younger people on this site using xeljanz but I don't know their ages.
Permalink Reply by cws on September 30, 2015 at 8:03am

Go to your doctor with all the published articles along with the 2010 genome study to make for a compelling case. He is going to prescribe it for alopecia...he has to. He is not going to make something up. He can send in the articles and case studies to the insurance to make a case. There is nothing FDA approved for this. Prednisone is never questioned because it is so cheap. If this drug was cheap, the insurance issue would be gone.

Best of luck. Just remember this isn't the end-all for treatment. New things continue to be discovered. I believe the stem cell treatments will become more perfected in the coming years. These will be closer to a cure.

Permalink Reply by Lucas hoo on September 30, 2015 at 5:10am

what cost would be on this treatment?

Permalink Reply by cws on October 1, 2015 at 9:28am

http://www.pmlive.com/pharma_news/third_positive_phase_iii_trial_fo...

Hopefully a new JAK2 coming next year...a safer one.

Permalink Reply by singh on October 1, 2015 at 10:58am
That's a great find cws! But if it gets approved it will be for arthritis? Or do you think it will get approved for alopecia?
Permalink Reply by Karen Smith on October 1, 2015 at 11:00am

This is great news!! Hopefully it will get approved for Alopecia and we will not have these insurance battles in the future. I do believe we are on the verge of finding effective treatments.

Permalink Reply by DJ88 on October 1, 2015 at 11:41am

But that Article only mentions the clinical trial being for RA. Alopecia isn't mentioned anywhere in that Article. Whose to say it wont be the same situation all over again? And has this ever been used to treat anyone with Alopecia or is it just another Jak inhibitor so people are putting two and two together?

Permalink Reply by cws on October 1, 2015 at 1:22pm

It is targeted for RA but has also been shown to work for alopecia. With the safety profile being better than xeljanz, it will have a better chance of FDA approval for alopecia.

I know it never feels fast enough, but the key is that things are moving forward in this class of drug and it should be only a matter of time for it to be approved for alopecia. Even if approved, that does not mean your insurance will cover it...it's a frustrating disease for more than one reason. Stem cell treatments are what I really want to see develop.

Permalink Reply by singh on October 1, 2015 at 2:04pm
Is there any articles on stem cell trials for hair? Or any idea when you think this might become a treatment for alopecia ?
Permalink Reply by AlopeciaDestroyedMyLife on October 1, 2015 at 2:16pm

This is really the beginning, It's sad that things have taken this long to take off but in time things will only improve and get better and eventually we will have something that resembles the cure we all are craving for.

For now Xeljanz is 100% the way to go .

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