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 singh on August 14, 2018 at 4:31pm

Hi James, how you getting on with your hair growth mate ? 

Permalink Reply by James 2me on August 14, 2018 at 5:04pm

I stopped Xelljanz in 2017 because of the slow response  went back on it8 months ago at  a higher dose of 3 tablets a day. Currently have full eyebrows and lashes complete facial hair and about three quarters of scalp back  and still filling in thanks Singh 

Permalink Reply by singh on August 14, 2018 at 6:40pm

Amazing James! So happy for you ! Will be looking forward to your pics once all your hair is back. And thanks for letting people know about baricitinib !

Permalink Reply by Jj_085 on August 14, 2018 at 7:05pm

Hi,

curious how are taking 3 pills? 2 in the morning, 1 at night or spaced out throughout the day?

thanks in advance 

Permalink Reply by James 2me on August 14, 2018 at 7:16pm

I take 2 in the morning and one in the evening 

Permalink Reply by Carlie on August 11, 2018 at 9:43pm

I use it too, I think it's helping with my lashes although the are still very fine. I bought 3 bottles the last time I was in Mexico, it was fairly reasonable.

Permalink Reply by serg navaro on August 22, 2018 at 1:44pm

For those of you that are having successful regrowth, are you taking any supplements? Are you avoiding certain foods? I’ve been on xeljanze for little over 2 years now but I seem to be stuck at about 50% scalp regrowth. I take 3 pills a day.

Permalink Reply by cardiganblues on August 22, 2018 at 2:09pm

9 years of AA -> AU. I'm on baricitinib 5mg from December 18th, went up to 25mg May 15th (8 months and 4 days all together). Had some shedding for 3 months but it's stopped now--left  one bald patch behind, the only smooth part of my scalp currently. Eyebrows and lashes 100%. Once I incorporated silica complex 1.5 months ago, the scalp hair grew at a stupidly quick pace and is so smooth without having to use shampoo/conditioner yet. I mean...remember the picture in the last panel is only one month ago. 

Side effects: Some acne, no coldsores. One UTI. No weight gain. Past six weeks after quitting cigarettes I got pneumonia and what looks like eczema around my eyes due to heightened allergies. Great blood work since recovering tho. 

Jan 27th, March, and end 24th of July respectively:

Today: 

Permalink Reply by Shad on August 22, 2018 at 2:30pm

Wow , it’s awesome! I’m 10 years no hair and using Xeliganz for 7 months now 

just wondering what kind of sillica complex you are using? 

Mans baricitinib is same as Xeliganz or not? 

Thanks and good luck! 

Shad 

Permalink Reply by cardiganblues on August 22, 2018 at 3:11pm

I use salica complex from holland and barret. 

I really hope you have something close if you're outside of the UK/Ireland! Because I'm shocked by its effectiveness.

Also, give xeljanz more time. I genuinely don't think there's non-responders to jak-inhibitors who won't eventually respond? I know what Dr. King said about 10 years, but it's still not enough time imo. Best of luck Shad <3 

Permalink Reply by singh on August 23, 2018 at 7:10am

Hi Shad, 

What does of xeljanz have you been on? 

Thank you.

Permalink Reply by Frida Rupert on August 22, 2018 at 6:19pm

That’s amazing! I think baricitinib and Ruxo are the next options for non - responders - just got to find a way to get it to them logistically and without bankrupting them. How did you manage to get onto barcitinib and do you know of affordable options for the non- responders? 

Its excellent progress - and amazingly quick!

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