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 DJ88 on January 8, 2017 at 8:46am

How long were you using Xeljanz for?

Permalink Reply by singh on January 8, 2017 at 1:17pm
Was on xeljanz a total of 6 months with 2 months on and 2 months off and that was the pattern..
Permalink Reply by Giusep on January 11, 2017 at 6:41pm
Hi All, I have some great news to share with everyone!!! After a little under 4 months of being back on 5mgs xeljanz 2x a day, all of the spots on my wife's head have regrown back!!! This medicine is truly a miracle drug!!! My wife also started to take 3000 mg of biotin a day, which could of definitely helped with the regrowth.
Permalink Reply by singh on January 11, 2017 at 7:50pm
Amazing guisep !! Happy for your wife ! I honestly feel even the people who dont respond on 2 a day would respond on 3 or 4 a day. Just from the consistency needed. Can I ask in total how long has your wife been on xeljanz collectively ? And any major side effects ?

Kind regards
Permalink Reply by Giusep on January 14, 2017 at 5:41pm
Hey Singh- I hope all is well. My wife was on 5mg xeljanz 2x a day for a little under 2 years with comeplete regrowth. About 5 months ago my wife came off Xeljanz which resulted in 4 large patches. Since being back on Xeljanz for the last 4 months she has regrew back all of the hair in the spots that shredded. No side effects to date except high cholesterol.
Permalink Reply by Starshine on January 14, 2017 at 8:41pm
Giusep,did she stop completely or reduce the dose. I have also regrown all of my hair and was thinking of reducing from 3 to 2 a day and eventually maybe one a day. I know you can't stop completely, but was really hoping a lower dose was possible.
Permalink Reply by Patchylatchy on January 14, 2017 at 8:44pm
Hi starshine did you grow back eyebrows and eyelashes?
Permalink Reply by Starshine on January 15, 2017 at 5:41pm
Hi Patchylatchy, yes, I have completely regrown eyelashes and brows are about 75 percent. The brows took a long time to come in and are still not 100 percent, but lashes came in beautifully 100 percent. Been on Xeljanz over two years. Hair is shoulder length now.
Permalink Reply by sultan h on January 15, 2017 at 6:06pm
How many pills you take starshine ??
Permalink Reply by sultan h on January 15, 2017 at 6:08pm
Starshine !! I have been on xeljanz around 9 months my scalp hair regrowth but brows and lashes still nothing
Permalink Reply by Giusep on January 15, 2017 at 8:39am
She reduced the dosage from 2x a day to 1x a day then completely stop after about a month of tampering off the medicine. Then her hair started to shed like crazy. Everyone reacts differently it's all about finding what dosage works for you.
Permalink Reply by Katrina on January 12, 2017 at 10:17am
Sharing an update...
26 year old female. No personal or family history of alopecia.
Randomly became 100% AU in the matter of 6 weeks in a diffused pattern, starting at the end of May.

Began Xeljanz mid August at 2 pills a day.
Increased to 3 pills a day starting mid November.
Now, in mid January, I am almost at 5 months on Xeljanz and I am currently alternating 3 and 4 pills a day.
Side effects: exhaustion, weight gain (20 lbs.), and 2 serious colds.
Photo attached:
Top row: Top of head at 1/3/and 5 months on Xeljanz
Bottom row: back of head at 1/3/and 5 months on Xeljanz
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