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 Megn on August 25, 2015 at 12:31pm

I tried to catch the brows and lashes, but they are not easy to take pics of.  

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Permalink Reply by Summer2000 on August 25, 2015 at 1:48pm
I am AT was on Xeljanz for 3 months with no results or complications. I had been off about 3 weeks when last week I noticed a stubble on the crown of my head. Called Doctor and he called me in. He was pleasantly surprised as the stubble was significant terminal hair on the top of my head. He saw vellus hair present in other areas. For terminal hair he thought it's been growing for a while. So he put me back on the Xeljanz and we did a cortisol shot too. My next question - when does the stubble become visible hair. It's seen easily now with a mirror, but unless you really look a normal person won't see it. Assuming growth is slow and steady? Just nervous and anxious.
Permalink Reply by Xeljanzmiracle on August 25, 2015 at 2:07pm
Why are you worried? The guy that started this blog didn't see any serious results for 7 months! Your hair is growing back. That's WONDERFUL NEWS!!! Just stay the course, Xeljanz works! Your vellus hairs will all turn dark. Be patient and EVERYONE WILL SEE YOUR REGROWTH IN TIME. I'm happy for you.
Permalink Reply by Summer2000 on August 25, 2015 at 2:10pm
Thank You - only worried it doesn't progress.
Permalink Reply by Sabri on August 25, 2015 at 3:15pm
Hi use minoxidil it will give your hair a boost.
Also eat a lot of protein foods.
Permalink Reply by Xeljanzmiracle on August 25, 2015 at 3:19pm
You're welcome! If you have time, go to the beginning of this blog and read his earlier discussions. A lot of people started with small vellus growth and grew from there. I have only been on Xeljanz 3 weeks but SO EXCITED!!! I was trying to get approved for it since last October. Finally, I got it and have hope. Keep us posted. We are all rooting for you!
Permalink Reply by Lisa Smith on August 25, 2015 at 4:17pm
My derm told me Xeljanz is not working for females as well as it is for males. Has anyone else heard this from their doctor?
Permalink Reply by Seahawks Dad on August 25, 2015 at 4:27pm

Lisa...I think it's absolutely critical to be working with a Doctor who not only prescribes Xeljanz to a large amount of patients..but is also familiar with the medical itself. To say that this works only for males vs females is totally without merit. We traveled across the county to visit Dr. King to specifically work with one of the best doctors and leading researchers in this area. My 15 year old daughter has fully re-grown her eyebrows and on her way to all her hair. There is so much miscommunication out there..and I'm thankful for this website so we can all share our experiences.

Permalink Reply by Summer2000 on August 25, 2015 at 10:02pm
I think you are raising a good point and would love to hear more about what differentiates Dr King. I think I am the only patient in my doctors office on Xeljanz. I actually suggested it. After a few months with no success he asked me to stop taking the drug, but I am reading here that it might take 7 months, might need to bump to 15 MG, might need something to go along with it, like cortisone. By chance I noticed growth and off we go again upped to 15 MG.
Permalink Reply by katiegirl on August 25, 2015 at 5:04pm
Hello all,

I just wanted to give everyone an update. I have been on xeljanz now for 14 weeks and have about 90% of my scalp hair. I did take 15mg for a month of this time but am back down to 10mg. I followed up with my rheum today though who said my liver enzymes are mildly elevated. That was probably from taking the 15mg. I will see what new bloodwork is tomorrow. My eyebrows are also all back but no eyelashes as of yet. I know others aren't responding as fast I wish everyone was. But wanted to give an update here. I was only AT progressing to AU newly diagnosed in February.
Permalink Reply by katiegirl on August 25, 2015 at 5:07pm
Trying to attach pictures but not sure if working
Permalink Reply by katiegirl on August 25, 2015 at 5:55pm
Picture left side
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