Alopecia World
www.alopeciaworld.com
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
Replies to This Discussion
-
Permalink Reply by Frida Rupert on
-
Hi Starshine, love your hair- such a beautiful color too! I’ve heard of someone else recently who had the approval of xeljanz by insurance removed so I wonder if the insurance companies are cracking down right now. Hopefully an appeal will work or xelsource will be an option. Thanks so much for letting us know how you are, you are one of the longest contributors to the forum and hearing of your success is so encouraging!
-
-
Thank you, Frida. Xeljanz truly gave me my life back and although I have not posted on here in a while, I do check in from time to time and want to thank you for helping so many people just starting out. This truly is an emotionally devastating condition. I wish the insurance companies would read this forum. I agree that it seems like they are making it more difficult to get approval for some reason. I was hoping as time went on, more insurance companies would get on board, but sadly, that is not the case.
-
-
Curious if Xelijanz only works for people that have weak immune systems? I believe it’s still possible to have alopecia with a solid immune system.
-
-
Hi Joja101, I don’t think it’s a case of a strong or weak immune system - just a disordered one. In someways the tofa works better on a strong immune system as it reduces the severity of an immune attack on the hair follicles but I think the actual constant misguided overly active immune response can cause the body to weaken over all hence why some of us find ourselves less sick on the meds than before. Our immune system is no longer wasting energy attacking parts of our body that aren’t a risk to us. So you are correct, alopecia can exist in a strong immune system - but equally autoimmune disorders weaken the body’s ability to target the real problems. About 8”% of people respond to some degree on Tofacitinib, for the 20% that don’t respond at all - well that is a mystery that I wish we could solve.
-
Permalink Reply by sadele on
-
Hi All,
I haven't been on here in a really long time but wanted to give an update.
Just a Recap:
I lost all the hair on my head in 2013 when I was pregnant with my daughter. A year later all my hair grew back naturally with no medication.
In 2015 I became AU, losing every hair on my entire body. I learned about Xeljanz and began taking it in 2016 and was considered an “incomplete responder”, meaning I only had 60% growth. I stopped the medication for 6 months and went back on it taking 20 mg and very shorty had a lot of growth. About 85%.
I got pregnant Witt my second child in 2017 and had to stop again. Only this time my hair continues to grow, except the very front.
I had my son in 2018 and a month later bagan Xeljanz again at 20mg a day and had 100% growth including lashes and brows.
Currently, I have a full head of hair. My brows have thinned out a lot and I only have lashes on my right eye. The left eye is trying to grow them but they a white and tend to fall out.
i attached a picture of my hair growth over the past year. This was taken last week in Hawaii so it’s pretty frizzy from the humidity but you can see it’s growing!
-
-
Omg, your hair is so long! is that from 2 years growth? You must feel wonderful!
-
-
Congratulations Sadele :) So happy to read success stories like this.
You have beautiful children. God bless.
-
-
Sadele - you look gorgeous! As do your kids! I’m so happy that you have such a beautiful head of hair. Thanks so much for giving us an update - I often wonder about people on here who go awhile without posting - are they ok, did they sustain growth, etc and am just so happy when we get a positive report?
-
-
Hi Frida ! Quick question plz on the days you took bethamethasone did you stop taking xeljanz ??
Thank you inadvance
-
-
Yes, take your normal dose of Tofacitinib on both days. The betamethasone will help the Tofacitinib get started - once growth (or better coverage) is established wean off the betamethasone. I was on 3 months then weaned down. Once growth is established the Tofacitinib is usually strong enough to maintain but it can need a boost to get started. The steroid pulsing is always short term as long term steroid use is problematic. Hope you are well Singh!
© 2024 Created by Alopecia World.
Powered by
