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 January 12, 2017 at 1:33pm
Amazing Katrina !! Just with the weight gain, xeljanz could mean a side effect that you hold more water weight so try up your water in take a day. That will let your body hold less on water meaning you might lose the extra few pounds.

Kind regards
Permalink Reply by Suzie on January 12, 2017 at 1:38pm

I  have read a lot of people have been gaining weight with Xeljanz.......I noticed that I have been snacking quite a bit more, so I have to really watch what I eat.  I've also been exercising since the Xeljanz has been helping my RA as well.....I put on 5 lbs in the 2 months I've been on it.

Permalink Reply by Rascalx2 on January 12, 2017 at 3:34pm
I notices when I first went on xeljanz my appetite really increased but eventually tapered off. I just increased mg past month and appetife has increased again.
Permalink Reply by Katrina on January 12, 2017 at 1:41pm
That's a good idea... I will try it, thanks!
Permalink Reply by James 2me on January 12, 2017 at 2:15pm
Woow that is so awesome looks like you turned a big corner in progress. I was on regular dose myself for 9 months had growth but it was not complete I recently started rotate ing the 3 pills a day and the 4. Gained some weight 10 lbs but i am actually at a perfect weight I have the cold thing going on now with a lot of coughing doctor put me on an antibiotic med which I just finished. I actually stopped Takeing the Xelljanz for 8 weeks in October out of frustration. Hopeing the higher dose helps.
Permalink Reply by Patchylatchy on January 12, 2017 at 2:57pm
Congratulations..hoping to see more and more progress!! Thank you for updating us
Permalink Reply by Patchylatchy on January 12, 2017 at 2:58pm
I forgot to ask. Did you have your eyebrows and lashes back?
Permalink Reply by Katrina on January 12, 2017 at 3:02pm
I have very few eyebrow hairs, maybe 12 on each side. Only some of them are pigmented. (I got them tattood in August).
Eyelashes... same deal. I think I have 3 or 4 pigmented ones coming in, but only about a dozen eyelashes total. They can only be seen when looking very closely.
They are what I miss the most...
Permalink Reply by Patchylatchy on January 12, 2017 at 3:15pm
I guess with time you will see more..keep updating us..amazing!
Permalink Reply by Rascalx2 on January 12, 2017 at 3:43pm
Katrina, I agree about eyebrows, i think at this point, I would just be happy with having them. Im not miroblading because I feel it looks too feminine for me.... Im a male. Been on xeljanz since july 2016, have increased mgs to 15 & 20 mgs a day. I have fine hairs on scalp, microscopic on eyebrow area. Still gonna take it for a few more months, if nothing substantial in next few months Im gonna call it quits with xeljanz. This is most activity I have had with ANY hair since it fell out (AU) last january.
Permalink Reply by Patchylatchy on January 13, 2017 at 3:26am
Looks like ur not too optimistic..maybe you should give it more time?
Permalink Reply by Xeljanzmiracle on January 13, 2017 at 5:57am
Don't give up Rascalx, your hair regrowth HAS begun! Be patient, we all started with fine, translucent hairs. They are usually whitish blonde at first and the pigment comes in later. Regrowth is at different levels for all of us, but ANY is progress. Congratulations!

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