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: 927903

▶ Reply to This

Replies to This Discussion

Permalink Reply by DJ88 on August 19, 2015 at 5:43am

Hey guys,

I have a few more questions. Im ready to attempt Xenjanz. I thought with the clincal trial coming out in october this would be approved much faster but i guess m wrong. My questions are:

1.) Do you think some insurance companies would possibly still cover this after showing them positive clinical trial results?

2.) What is the best way to go about getting on Xenjanz. Im trying to ride this out for as long as I can.

3.) whats all the plans available and how long do they last?

Permalink Reply by Xeljanzmiracle on August 23, 2015 at 11:34am
Call Xelsource! The absolute best way to go is FREE of course! I didn't have to use any type of co-pay card. Call Xelsource to get the answers to your questions because everyone's income and or insurance coverage is different.
Permalink Reply by AU1989 on August 23, 2015 at 11:09am
Image of top of my head at 8 weeks on xeljanz. Eye brows at about 40%. I was 100% AU and did methotrexate for 7 months prior.
Attachments:
Permalink Reply by Xeljanzmiracle on August 23, 2015 at 11:23am
That's WONDERFUL! I have only been on it for 3 weeks, but am very excited about it's potential. The top of.my head is not as smooth as it was before I started. It feels sort of "fuzzy" now. Is that how your hair first felt? It could be my imagination, lol!
Permalink Reply by AU1989 on August 23, 2015 at 11:19am
Image of top of my head at 8 weeks on xeljanz. Eye brows at about 40%
Attachments:
Permalink Reply by sadele on August 23, 2015 at 11:21am

Keep Fighting AU1989! That is wonderful progress! I'm starting week 7 on Xeljanz, however, starting September I'm going up to 20mg a day for three months. Praying this works!

Permalink Reply by katiegirl on August 23, 2015 at 11:48am
Serina you have tried 15mg already? 20mg just seems like a high dose. I am sure if I wasn't seeing results I would have went up as well but just curious!
Permalink Reply by Merry on August 24, 2015 at 5:39pm

Is there anyone on here who did not have success with 2 xeljanz tablets per day, but did get results from 3 tablets? I have been on 2 per day for 5.5 months and have no regrowth. I am AU. Any advice?Thanks

Permalink Reply by AlopeciaDestroyedMyLife on August 24, 2015 at 6:00pm

If you and your Dr and comfortable moving up to 3 tablets a day then I would give the increased dosage a go. 

It's worth bearing in mind that I didn't have any significant growth until my 7th month. If 2 pills a day are suppressing your immune system  enough already then increasing dosage will not help. The hair will grow at it's own rate on it's own terms i'm afraid. Chin up!  It's just a matter of time.

Permalink Reply by Merry on August 25, 2015 at 12:02pm

Thank you so much for your reply ADML. You are such a great source of support. You are having results and could just go on and enjoy a more normal life, but you continue to support the rest of us on here. I am feeling pretty desperate because of my lack of results, but hearing from you is comforting. Thanks for being such a kind person!!!

Permalink Reply by singh on August 24, 2015 at 9:02pm
Can I ask are you taking anything before you started Xeljanz? Like another immune suppressor? Because one thing I have realised the majority of people who are having the most success are either taking something along side Xeljanz or prior to Xeljanz. It's worth thinking about and speaking with your Dr about.
Permalink Reply by AlopeciaDestroyedMyLife on August 24, 2015 at 5:56pm

Fantastic AU1989 !

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