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.
-----------------------------
Related Post on Alopecia World:
Replies to This Discussion
-
Permalink Reply by kimberj on
-
I too wonder what stress has to do with the autoimmune response on our body. Some doctors say it doesn't have any bearings and others say it does. I do know that a couple years back when I first lost all my hair and my body went crazy; I was dealing with ALOT of stress. I'm talking major everyday stress for 4 months stress. The funny thing is that my hair and RA didn't appear until 6-8 months AFTER the stress was gone!? I too have had thyroid issues for many years but it turned to Hashimoto's after my stressful time. They ended up doing a total Thyroidectomy last October. My doctor was hoping that it would be the cure all for me but obvisiously that isn't going to be the case for me. Now after having a very stressful summer, I'm going through it all again. Even my RA is flaring.
-
-
Hi Starshine. I will definitely let everyone know what the doctor says. I haven't tried cortisone shots since I have been on Xeljanz but had 200+ injections over a year span. They only worked temporarily and then the hair would fall out two months later. Also, the hair nearest the injection site would fall out immediately. My dermatologist suggested that steroid treatment of any kind was a hit or miss. Generally just a quick fix and any hair that came back but would eventually fall out again soon after steroid pills or injections were stopped.
My hair had grown back totally white while on Plaquenil but didn't regain pigmentation until I started on Xeljanz. I guess it was a couple of months before I started seeing black hair. It has progressed in color and thickness every month till now.
-
Permalink Reply by Jckah on
-
Ugh my heart sank reading this. Good luck chicky, I hope it's just a small relapse and your body gets back on track soon! Thank you for the updates also, I was mentally prepared for this to happen off Xeljanz but I'm now mentally prepared for it to happen at any time, which I believe we all need to be. I believe I'm still shedding mildly in certain spots, but it's hard to tell, I don't really know what's considered normal shedding
-
-
Thanks so much!!! I too was mentally prepared for this. I'm actually OK with it. Don't get me wrong, I'm super disappointed and very sad to lose my hair again but I do get tired of the battle. I have made myself accept my situation. (You should hear my bathroom mirror conversations with myself) They are hilarious sometimes!!! Lol!!!
-
Permalink Reply by HS on
-
Hi Everyone, I have not posted in a while. I was getting a bit discouraged but recently took a picture of the back of my head and feel much better and thought I would share.
I started Xeljanz on July 2nd, so I am at week 22. I am 45 and started with AA at age 14, became AU at age 39.
I had one other treatment that worked which was the prednisone/cyclosporine combo, but I had to stop it because I gained so much weight and it was unhealthy.
I have full eyelashes and eyebrows (no pigment yet) and on my scalp, I can see the dark hair beginning to grow in. I am a natural blonde. - Attachments:
-
-
image.jpeg, 1.1 MB
-
-
-
Here's the back of my head.
- Attachments:
-
-
image.jpeg, 1.4 MB
-
-
-
I'm behind on my posts as well. Stars home I had the same thing happen to me.. All was going great, woke up one morning at it was all falling out again:( I've increased the xeljanz a few months ago, but no new changes. To all those that it's working... So happy for you!!! Hope this the right course for you all:)
-
-
Lusha22, do you mean that you were also on Zeljanz when yours fell out again?
-
-
Yes:( I was on 5mg BID and was seeing growth everywhere. The white parts were turning brown/black.. But I was having slow growth. Then one morning I woke up to hair on the pillow and within a few days it all started to fall out.
-
-
Wow, were you under any stress? How long were you on Zeljanz when it fell out? I am really sorry to hear this, it is a little discouraging.
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.
© 2025 Created by Alopecia World.
Powered by
