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 Anna on May 11, 2018 at 11:11pm

:)

Permalink Reply by Frida Rupert on May 12, 2018 at 7:38am

As long as bloods good and docs are fine (and you feel healthy) I I think 50 wouldn't be unreasonable. A steriod shot on the butt or some oral steriod pulsing could be cheaper and effective at getting this off the ground. Fingers crossed girl- I really think you'll get there- don't lose hope xx

Permalink Reply by Starshine on May 10, 2018 at 4:49pm

It has been a while since I posted been on here, but this is my 4-year anniversary on Xeljanz.  I too, was a slow responder at first.  I agree that the kenalog injections do help speed up the progress and, for me, Plaquenil also helped.  I was on a 15 mg dose of Xeljanz for about 3 years and reduced to the normal dose of 10 mgs this last year.  No side effects other than some weight gain.  For those who are just starting out, hang in there!   

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Permalink Reply by Suzie on May 10, 2018 at 5:00pm

That's awesome growth! Thanks for sharing for those who haven't responded well at first to Xeljanz.

I am going through Androgenic alopecia now......I had AA four years ago and thought I was in the clear when all of my patches started filling in, but now I have Androgenic alopecia as well as Hashimotos and menopause so I'm wearing extensions and eventually I will have to wear a topper.  This is definitely so depressing to say the least when 4 years ago I had a full head of hair!

Permalink Reply by kevin on May 11, 2018 at 12:52pm

hello suzie it is now 3 months that I am on xeljanz and recently I have a mausaise in the stomach also I was constipated and when I eat my belly is but in a bad state and I feel that I digest food badly

Permalink Reply by kevin on May 11, 2018 at 12:54pm

what was your stomach problem?I do not know if it's related to xeljanz it's 2 days, I hope it will pass because I have good growth

Permalink Reply by kevin on May 11, 2018 at 1:05pm

I do not know if it's related to xeljanz it's 2 days, I hope it will pass because I have good growth

Permalink Reply by Anna on May 10, 2018 at 7:45pm

Thanks for sharing Starshine! How long did it itake before yuo noticed the first signs of growth? Your hair is so long now!! Amazing!

Permalink Reply by Football fan on May 10, 2018 at 10:58pm

Star shine is that your natural color.So happy for you.You were one of the pioneers of xeljanz,

Permalink Reply by Starshine on May 11, 2018 at 8:56am

Hi Football Fan, that is the strange part, I am a brunette, but my hair came in snow white and gradually changed to the color in the picture, which is platinum blonde, I guess.  Maybe because I am older, that's the only thing I can figure.  I know you have tried everything with no response.  In your case, I think you need a  biologic which targets a different pathway.  They are out there, don't give up hope.

Permalink Reply by Starshine on May 11, 2018 at 8:50am

I noticed some very fine, white growth at about 2 months, but it did not seem to be doing much until my doctor did injections on my entire head (ouch) and then upped the dose to 3 a day.  Also added Plaquenil.  Right after that, it really took off.

Permalink Reply by kevin on May 11, 2018 at 4:59pm

hello I would like to talk about the side effects I had.
moderate acne that since 4 days is much better
herpes, which has totally stopped
and there for 2 days I had constipation the doctor ma it is the irritable bowel, I have trouble digesting food I like a stomach discomfort.
I am no longer constipated, but an embarrassment in the stomach of the stomach that gurgles.
I am really afraid of having to stop xeljanz or have a bad health effect.
thank you for telling me this you had this

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