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 rew on October 17, 2017 at 4:25am

Hello, everybody.

I live in Spain and here it is almost impossible for a doctor to prescribe xeljanz for the universal alopecia I suffer, and it is also so expensive, so I decided to buy the active ingredient, tofacitinib citrate, through the website alibaba.

The company was a manufacturer, not a simple distributor, and everything went well during the purchase process. I got a good price for 10 grams, enough for a couple of years of treatment (about $450) but when I paid for the order, on the confirmation screen, it said this:

THIS MATERIAL IS ONLY SUPPLIED FOR R&D or TEST ONLY, NO COMMERCIAL USE, CAN' T BE USED FOR HUMAN DIRECTLY.

When I asked the salesperson the difference between the product they were selling and the active ingredient of xeljanz, she wrote me the following:

"Our product is raw material, it can't be used for person directly. Xeljanz drug is the finished product. If you need finished product you can buy it in drugstore."

And he gave me back the amount I had paid.

I tell you this because I don't know if he really didn't want to sell me tofacitinib citrate because it's not really suitable for human use or because they're forbidden to say it because of patent laws.

I may never know. I will continue to try to find xeljanz at an affordable price.

Greetings and strength to all.

Permalink Reply by Return_life on October 19, 2017 at 6:42am
he gave you back your money and you kept the powder?
of course he can't officially say that it's for human use. it would be illegal
finished product has lactose in it and some other chemicals... no big deal
make sure your product is good, you could send it to an independent lab.

stay strong
Permalink Reply by rew on October 20, 2017 at 6:31am

They canceled my order before sending it to me when I asked them if their tofacitinib citrate was for human consumption.

Do you really think we could use the active ingredient they sell instead of buying xeljanz? Do you know anyone who has?

Thanks, buddy. ;)

Permalink Reply by Katrina on October 17, 2017 at 4:46pm
Update- 26 year old female. 17 months since rapid/diffuse AU. 14 months on Xeljanz. Been on 20mg for almost a year now...

Hair coverage is probably 98%. Eyebrows and lashes probably 95%.

Side effects: weight gain (but it's starting to come down), exhaustion, and 3 serious colds.
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Permalink Reply by Katrina on October 17, 2017 at 4:52pm
More photos
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Permalink Reply by singh on October 17, 2017 at 6:32pm
Wow Katrina you look amazing !
Permalink Reply by jackson mcdonald on October 17, 2017 at 7:48pm
wow katrina your hair looks amazing. I just recently started xeljanz and am wandering if anything had an effect on the medicine. For example if you drank or smoked would that counter act the medicine and slow down the process.
Permalink Reply by Katrina on October 17, 2017 at 10:18pm
I don't drink heavily (maybe 2 glasses of wine a week) and I don't smoke. Sorry I can't help you much there.
Permalink Reply by Frrankie on October 17, 2017 at 10:31pm
If you drink start takeing milk thisle. If your cholesterol start going up add cholestoff and fiber pills and add the gym. No idea about smoking.
Permalink Reply by Christopher's_mom on October 22, 2017 at 11:10am

Speaking for my son who is AU for over a year, been on Xeljanz for 9 months and went away to college 2 months ago with eyebrows, eyelashes and a full head of hair (with a couple of barely noticeable weak spots being addressed by cortisone injections)...

...He came home this weekend happy and in good health with the same full head of hair etc despite the college lifestyle and all that entails.

Permalink Reply by Hopemom on November 3, 2017 at 11:07pm
So happy for him.
Permalink Reply by Hopemom on November 3, 2017 at 11:09pm
Hope that he has no side effect. I wonder if he can decrease dose after stabilizing his hair growth.

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