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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Replies to This Discussion

Permalink Reply by cws on June 24, 2015 at 11:01am

I get mine checked every 3 months.

Permalink Reply by Lori on June 25, 2015 at 8:10pm

Thank you. I want to make sure my dermo takes all the tests I need. I'm being precautious. How are you doing on it? Any results yet?

Permalink Reply by molly on June 23, 2015 at 11:50pm

Hi - I'm curious if anyone knows what the outlook is for long-term use? I've read a lot about the 6 mo to a year studies, but I haven't seen any follow up on if it is something you continue to take forever. If you stop taking it after you see your desired results, does your hair fall out again? 

Permalink Reply by cws on June 24, 2015 at 11:04am

It will most likely fall out after discontinued use. This inhibits the signal to the T-cells it does not cure the underlying problem. There is always a chance of remission, but it is not guaranteed. However, I am hoping there will be more information published about a possible lower dosage maintenance schedule once all hair has grown back.

There are and will be more things to come to help treat this disease....

Permalink Reply by cws on June 24, 2015 at 11:09am

http://medicalxpress.com/news/2015-06-vitiligo-patient-arthritis-dr...

Looks like this drug might work for vitiligo as well...I have a small spot on my head. It will be fun to watch and see if this also gets fixed.

Permalink Reply by kimberj on June 25, 2015 at 11:21pm

I have begun to get repigmentation spots on my arms, hands, neck, and knees. 

Permalink Reply by lusha22 on June 24, 2015 at 10:30pm
Has anyone appealed the xeljanz with insurance and gotten it paid?
Permalink Reply by Nickibee on June 24, 2015 at 10:57pm
I have. Through blue cross blue shield ppo. My doc submitted documentation and they will pay for a year and then reassess.
Permalink Reply by speedy77 on December 30, 2015 at 4:35pm

Nickibee,

My Rx for Xeljanz has been denied. I also have blue cross/blue shield  ppo and want to appeal the decision. Can you give me some guidance as to what information was provided to the insurer for it to agree to the coverage on your appeal.  Any information would be greatly appreciated. I have alopecia universalis and am hoping Xeljanz will at least allow me to have regrowth of my eyelashes.

Thanx,

speedy77

Permalink Reply by dmac198 on February 2, 2016 at 5:38pm
Nickibee, I also have blue cross blue shield ppo. Do you know What information your doctor submitted to get you covered? Thanks
Permalink Reply by Kat on June 25, 2015 at 11:23pm
What did u all say to appeal and get approved?
Permalink Reply by Seahawks Dad on June 26, 2015 at 1:06pm

Good Morning Everyone,

I wanted to update everyone on my daughter's progress. We met with Dr. King last week and he was beyond helpful and extremely generous with his time. It's always interesting to hear someone's perspective on alopecia and how xeljanz is truly impacting people's lives. He is starting her at 10 mg per day and we have a follow up in 8 weeks. (with a blood test at the 4 week interval). Good press and good media continues to come out daily on this medication...and hopefully the costs continues to decrease. I truly appreciate everyone's feedback. I will be taking pictures of her progress and sharing with everyone. He did say Xeljanz was a lot less expensive to purchase in other countries...Switzerland, Greece, Turkey,($700-$1500)  etc. So maybe you take a vacation and save some money at the same time!

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