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 28, 2017 at 2:25pm
aclaris almost finished phase 1
concert pharma should start phase 2 very soon

maybe there are other companies but to my knowledge these 2 are the closest one...

it would have been SO MUCH faster if Pfizer tried to get another indication for Xeljanz. but I don't know if the FDA doesn't want or Pfizer is really not interested in this market. I understand on a business perspective why they do this. they don't incurred any extra cost to get alopecia aerata as a new indication and they continue to get the sales via off label sales!
Permalink Reply by Football fan on March 28, 2017 at 3:32pm
My doctor told me 2 years ago he talked with Pfizer directly and they weren't interested.
Permalink Reply by Patchesforlife on March 28, 2017 at 11:42pm
Thanks again its really sad that pfizer and fda worked om making xeljanz out there for us.
Permalink Reply by LIU CHUNXIU on March 29, 2017 at 2:41am
baricitinib is coming soon. maybe we can try do not know if it is expensive.
Permalink Reply by gcobb on March 29, 2017 at 8:24pm
Spot on return life. I work in clinical trials at grants management at the worlds best children's hospital. And that time line is spot on.

regarding the cuts to NIH. Yea they're coming think it came out today it's looking like 20% cuts a little over a billion so we can give more money to war machines even though our budget is over 300 billion more than the country with the 2nd largest budget. Gross
Permalink Reply by singh on March 31, 2017 at 5:16pm
Hey people just some good news for people who would like tofacitinib prescribed to them in UK and EU, which has now been approved and been granted a licence. If you have arthritis and alopecia this will be likely free on the NHS for you's.


http://www.pfizer.co.uk/latest-news/2017-03-28-xeljanz%C2%AE%E2%96%...

Kind regards

Singh
Permalink Reply by Lindzzej on March 31, 2017 at 5:40pm
Hey all, I've been on 5 mg twice a day for about 2 1/2 weeks n responding well with already visible growth. So happy I could cry. Question though, is there any interaction between alcohol and xeljanz? Is it ok to occasionally drink while on the med? Thanks, Lindsay
Permalink Reply by singh on March 31, 2017 at 6:23pm
That is great Lindzzej ! When I took it I did use to drink occasionally but dr did reccomend I drink as little as possible.
Permalink Reply by Lindzzej on March 31, 2017 at 6:25pm
Thanks singh
Permalink Reply by singh on March 31, 2017 at 6:32pm
Keep us updated Lindzzej with your progress ! Always great to hear the positive stories with people taking xeljanz. Just a quick question are you AA, AT or AU? And how long have you had alopecia ?

Thank you
Permalink Reply by Lindzzej on March 31, 2017 at 6:49pm
AA...I've had it for 20 years, I'm 29 years old. Been a terrible battle all my life, lost my all my hair at like 11 years old and later grew it back but now I'm having an awful flare up...tramatic stuff man. But anyway, incredibly happy to finally be on this med as my derm and myself have been fighting to get me on it for well over a year. Just had bloodwork done so hopefully all checks out w that.
Permalink Reply by singh on March 31, 2017 at 7:07pm
Aww well am happy this will hopefully work for you . Grown up with alopecia myself I can totally relate to how you feel. Am happy they are finally considering alopecia as a disease and not cosmetic. Stay positive Lindzzej.

Kind regards

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