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 Dolly on December 24, 2016 at 2:00pm

Bibby, I sent you a friend request. Let's keep in touch, as I'm considering Turkey as a future option. We can exchange info.

Permalink Reply by Villa fan on December 24, 2016 at 10:29am
Folks, you can get Xeljanz at a set pricein Turkey, and probably from any pharmacy, it just might take a day or so if not the city. The pharmacies are government regulated and the price is set by the government. I got mine in Marmaris.
Permalink Reply by Return_life on December 24, 2016 at 12:18pm
Turkey, especially Istanbul is a wonderful place to visit. I went there a few years ago and I felt 100% safe. don't fall in the BS propaganda.
Permalink Reply by Katrina on December 24, 2016 at 4:14pm
Just a little update...
Just over 4 months on Xeljanz.
26 year old female. No personal or family history of alopecia. Became 100% AU within about 6 weeks (end of May to early August).

Possible trigger: went into anaphalactic shock 2.5 months prior to onset of hair loss from eating a hazelnut (which I am severely allergic to).

Started Xeljanz mid August at 10mg/day
End of Month 1: mid September, 10mg/day
End of Month 2: mid October, 15mg/day
End of Month 3: mid November, 20mg/day
End of Month 4: mid December (today), alternating 15 and 20mg/day

Blood work: normal
Side effects: Two serious colds that lasted 8 days each, weight gain (10-15 lbs), exhaustion.

Hope you all have a wonderful holiday with your family and friends!
xo Katrina
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Permalink Reply by bibby on December 24, 2016 at 10:32pm

Looks pretty amazing , well done on this achievement . In another 4 months you will be sporting a ponytail 

Permalink Reply by Return_life on December 26, 2016 at 11:03am
amazing...
Permalink Reply by singh on December 27, 2016 at 6:57am
That's amazing Katrina so happy for you ! How long have you had alopecia for? Do you think upping the dose made the difference?

Can I if anyone has been on xeljanz atleast 2 years to answer this ?

Have you had full regrowth and maintained it ?

And what side effects have you's had?

King regards
Permalink Reply by Rascalx2 on December 27, 2016 at 7:21am
Katrina, Happy for you, Im sure you are feeling pretty good about progress!! Are you alternating 15 and 20 mgs daily? I went up to 15 mgs past few weeks and have a couple sprouts but seems like people who were slow to rrspond had better results w 20 mgs to start increased activity to "get over the hump"
Permalink Reply by Return_life on December 27, 2016 at 11:33am
Rascalx2
you think slow responders are better to start the therapy with 20mg/day? is there any scientific evidence or just your observation?
am thinking of giving a new shot but with more serious dosage... and if that's the case I would start from the beginning with a high dose to shock the body.
Permalink Reply by singh on December 27, 2016 at 12:54pm
Hi return to life , I read you was on xeljanz for 7 months with not much growth, so was wondering was that because you was on a standard dose ? Or did you try a high dose ?

Thank you
Permalink Reply by Xeljanzmiracle on December 27, 2016 at 12:56pm
To be honest guys, although a lot of us had regrowth with 2 a day, I think starting at 3 would benefit the majority. Once I started at 3 EVERYTHING filled in. I was just following Kyle Rhodes' pattern. Dr. king put him on 3 the third month.
Permalink Reply by bibby on December 27, 2016 at 9:06pm

Would it be worth considering doing 3 x pills per day to get the initial fill in of hair and then taper down to 2 x pills per day to maintain the regrowth ? 

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