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 kevin on July 28, 2018 at 12:07pm

Hello frida

Permalink Reply by kevin on July 28, 2018 at 12:07pm

me too it has gone slightly so I'm not worried. the increase of lymphocytes means an infection I will do other tests but I do not have any recent infections and I did not get sick. I support very well betamethasone and xeljanz no weight gain I had early acne but treated with a cream.

5 months under xejanz at 10mg and 2 months of betamethasone.
I have 80% of my beard
60% of my eyebrows
40% of my eyelashes
and 30% of the most stagnant hair is my hair. did you think it would help 20mg?

on the other hand I have almost no hairs that fall seems to hold well

Permalink Reply by Frida Rupert on July 30, 2018 at 6:37am

Hi Kevin,

i think 20 mgs is a good idea. Many of the people who have had a great response have been on 20 mgs, and you can always go back to 15 mgs when you feel you have reached a stage where you just want to maintain.. Though maybe wait a few weeks to see if your next blood results are ok. I think, like my little ALT spike, even in people not on medication have these things happen, but just to be safe I’d hold off till your blood results are all normal again. You are making good progress. I think slow and steady is often just as successful as people who respond quickly- it just takes some people a bit more time for xeljanz to harness the run away immune system

Permalink Reply by kevin on August 1, 2018 at 7:12pm

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Permalink Reply by kevin on August 1, 2018 at 7:17pm

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Permalink Reply by Frida Rupert on August 1, 2018 at 7:44pm

Wow- your beard is looking fantastic! It’s grown a lot. Very good. The scalp looks like it is starting to come in now too. Good results. It can take up to a year for it to thicken up. Mine is thickening up more and more- it is a bit thicker now then pre alopecia - so the end results can take awhile to achieve. 

Permalink Reply by singh on August 2, 2018 at 4:49am

Looking good Kevin! Looking great mate.

Permalink Reply by mastros on August 4, 2018 at 5:33am

keep on. u r doing great.

Permalink Reply by singh on August 2, 2018 at 4:51am

Can I just say Frida, I love the way you still connect with us on here and your first hand views on your experience and regrowth on xeljanz as well as your recommendations. Some people who used to be on this group are no longer heard of . So thank you.

kind regards 

Permalink Reply by Frida Rupert on August 2, 2018 at 10:44pm

Hi Singh- that’s lovely of you to say. This forum helped me so much- I just want to give back a bit to the people on here as I wouldn’t be recovered without all of you guys. It’s a bumpy road... but information is the best tool we have to address our Alopecia. Now if only we could figure out how to treat non- responders! 

Permalink Reply by Sady on October 5, 2018 at 6:41pm

Hello kevin ,, what was your beard condition before strating up ?? Iam 30 and ive never had a beard 

Permalink Reply by mastros on August 1, 2018 at 5:51pm

Hi, has anybody stored xeljanz in the fridge when the room temperature is getting hot? is it safe to store it?

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