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.

-----------------------------

AW:  Other discussions on Xeljanz / Tofacitinib

https://alopeciaworld.com/main/search/search?q=Tofacitinib

 

Views: 927891

▶ Reply to This

Replies to This Discussion

Permalink Reply by Julie on April 8, 2015 at 12:05pm

i love looking at the success pictures! thanks for sharing!

as far as FDA approval goes I found this article online on webmd where they cite an interview with Dr. Christiano. ( http://www.webmd.com/skin-problems-and-treatments/news/20140819/hai...)

"In a partnership with drug companies Novartis and Eli Lilly, Incyte does not have any rights to develop Jakafi tablets for any use other than treating cancer, so it won’t ever get approved to treat alopecia, Murphy says. “We don’t want to raise expectations of patients inappropriately,” she says.

But, she says, Incyte can do what it likes with the topical form of the drug. While the company has tested the topical form on people with psoriasis (a long-term skin disorder that, like alopecia, is an autoimmune disease), it has no plans to pursue the topical form for that purpose.

“Right now we’re not doing anything with the topical, but we’re interested in working with Columbia [University Medical Center],” she says."

Has anyone else heard about this? Sounds like we may have to wait for FDA approval and therefore insurance coverage until they develop the topical..? Unless another company other than incyte develops a jak inhibitor? I'm hoping i a wrong on this but wanted to see if anyone had more information?

Permalink Reply by cws on April 8, 2015 at 1:21pm

I don't think Jakafi is a realistic expectation for in the near future (for various reasons including the one you posted). Baricitinib will likely be the JAK2 that has the most potential of becoming FDA approved for alopecia in the "near" future.  

Permalink Reply by Tomy Pereira on April 14, 2015 at 12:24pm

I'm wanting to see the possibility of treating me with this medication. Does Xeljanz make even the hair born, or is that not the others that hair born and then fall again?

Permalink Reply by Alayna's dad on April 14, 2015 at 9:01pm

Thank you for giving your time to this project. You are at the forefront for many. I hope everything goes well for you.

Permalink Reply by AlopeciaDestroyedMyLife on April 15, 2015 at 3:13pm

Happy to do it, I know how important this is, not just to me but to everyone else as well.

Permalink Reply by AlopeciaDestroyedMyLife on April 15, 2015 at 3:03pm

Here are this months photos :

Permalink Reply by joe on April 15, 2015 at 4:40pm
I like that tattoo who natural who did it ?
Permalink Reply by cws on April 17, 2015 at 9:37am

Awesome AMDL....fantastic progress. 

Permalink Reply by AlopeciaDestroyedMyLife on April 17, 2015 at 11:21am

Thanks cws,

How are you getting along?

Permalink Reply by cws on April 17, 2015 at 12:13pm

I am doing well, living well.

I am also getting more terminal on my head and face. My mustache, eyelashes and eyebrows are 100%.  My head is mostly terminal with a couple of areas still waiting on pigment. I can grow 90% of a beard now. 30% of my chest and arm hair. 50% groin area. All is good. However...still nothing, not even vellus, on my legs (weird, huh). I am very happy with my progress and I am glad to see yours moving along. 

Permalink Reply by AlopeciaDestroyedMyLife on April 17, 2015 at 1:32pm

you have almost all of your head hair back?

thats great .

I have a bit of terminal on my legs mainly on the top end but some are growing further down as well. 

Permalink Reply by Starshine on April 17, 2015 at 2:07pm
Cws, how many months have you been taking xeljanz now? I know ADML is about 9 or 10. I am at 6 weeks and have tiny vellus hair on most of my scalp, although it is very hard to see, but nothing else. Do you think this is a good sign?

RSS

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2024   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service