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 Jckah on August 24, 2015 at 5:56pm
6 week mark. I'm pretty positive the shedding stopped. I'm just excited/nervous to tell my friends and family about all of this. anyone who has met me in the last 7 years doesn't know about my alopecia because I stopped talking about it when I was 21 and it's become this big secret, which I hate and really didn't mean to happen. im slowly starting to tell some older friends about the Xeljanz, I even posted a picture of my hairy arms on Instagram (older friends understand how awesome it is, newer friends were like huh?). I haven't told my boyfriend of over a year, so that convo is happening soon, although I think he knows because he drops hints and he's an observant guy. I just hate keeping this from him.
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Permalink Reply by Football fan on August 24, 2015 at 9:55pm
OMG were in the same boat I haven't told all my friends and family either.Had 2 bad experiences went to a big 4th of July party a few years back 1st time wearing my wig felt a little nervous and thought I looked good and no one would ever be able to tell its a wig.Kind of mentioned to my mother inlaw that I had it on and immediately she went out and announce to everyone there that I was wearing a wig.Told her quietly thanks but I didn't want everyone to know and she got insulted and left in a huff!Second time I was crying on the phone to one of my best friends because I just shaved the little bit of hair I had.And the next time she came in town she stayed with someone else after giving a lame excuse.And we haven't been as close since.I don't want anyone to feel sorry for me and look at me differently so I just don't tell anyone.Just finished my 4th month and not much is happening keeping my fingers crossed it would sure make my life easier if I had my hair back!
Permalink Reply by Jckah on August 24, 2015 at 10:27pm
That's exactly why I stopped telling people. I hate being pitied or looked at differently, or constantly asked if I have cancer. I made the decision after running competitively in college, I'd have numerous experiences of racing without my wig, beating people, and they'd come up to me afterward to tell me how they had no idea about my hair before that day and felt so bad for me.....I'd be speechless, did I not just prove that I am healthier, fitter, and faster than you? It blew my mind. People absolutely treat you differently when they know. I told one of my coworkers last week, slowly getting myself ready to tell the people close to me, and her response was "and your boyfriend stays with you? Wow what a great guy" ....yup, she went there. I didn't know how to handle that mindset back then but I know I can now, and knowing the regrowth is happening is giving me that extra boost of confidence to help me out
Permalink Reply by Lori on August 25, 2015 at 8:33am

Im so happy you and football are opening up on this site. You guys don't see it but you are there. You both are doing better then you think. I'm so pride of you! ... what people think! My close friends only know. Want to laugh I have friends that say they love my hair and want to know my stylist. They want to go let her do her hair.  It was hard at first but now I'm starting to feel better about myself. Hoping to get to the gym this fall. My 3rd bottle is getting delivered this week hoping to see some progress. The shedding has slowed down yay! Good luck with both you so happy to read your posts!

Permalink Reply by Jckah on August 25, 2015 at 10:49am
Thanks Lori! I really appreciate that!
Permalink Reply by Megn on August 25, 2015 at 9:17am

Update: I have now been on the Xeljanz for 3 weeks today.  I see many little translucent hairs on my scalp, brows and lashes.  I have been AU for 3.5 years.  

Permalink Reply by Xeljanzmiracle on August 25, 2015 at 9:39am
CONGRATULATIONS MEGN!!! I have been on XelJanz for 3 weeks too without any results SO far, but I'M HOPING! I have been AU for 6 years. I realize that everyone's bodies are different, as well as response times, so I'm not going to get discouraged. But please continue to share your progress with all of us. It's SO EXCITING!!!
Permalink Reply by Megn on August 25, 2015 at 11:18am
Here is a pic!
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Permalink Reply by Sara on August 25, 2015 at 11:22am
Congrats , this is amazing result only in 3 weeks ,
Please update us again
Permalink Reply by Xeljanzmiracle on August 25, 2015 at 11:37am
What are the white things?
Permalink Reply by Merry on August 25, 2015 at 11:59am

Oh my goodness, Megn!!! I am so happy for you!! Do you find yourself going to the mirror and shining a flashlight on your head several times a day just to see that new growth? I did when I started to get my hair back using Cyclosporine. It is an awesome feeling!! I had to quit cyclosporine due to it causing kidney damage, and I haven't had any results from xeljanz yet, but I know it's a great feeling!! Please continue to post pics of your progress!!!

Permalink Reply by Megn on August 25, 2015 at 12:26pm

I have done that little find the hairs trick a in the past 3 years.  I actually looked at the the beginning 3 weeks ago, and then again yesterday.  I give myself a break from looking.  I was shocked when I saw these yesterday.  Us Alopecians are super good at finding just the right light to see the translucent growth :)

No side effects to report other than mild acne.  Blood work is perfect. 

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