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 AlopeciaDestroyedMyLife on
-
Hi Singh, i'm doing well thanks. Have you had any growth yet?
-
Permalink Reply by Alop88 on
-
Hi all, just started Xeljanz a week ago (had AU for about 15 years) hope it works. Is it normal its causing me to be nauseous after eating and at other times of the day? Other than that I've been fine thankfully.
Also, is it better to protect myself with multivitamins and Probiotics or would that kinda "offset" the function of the Xeljanz suppressing my immune system?
Thanks!
-
-
Hi Alope88,
I don't think multivitamins or probiotics will offset anything. It shouldn't really be making you nauseous. Are you taking it after eating?
I would talk to your doctor as there are so many factors. Age, diet, etc.I hope you have success with it. I have AA and am about 90% fully grown back (lashes, spots, beard)
-
Permalink Reply by Suzie on
-
Alop88 I take a smoothie every morning that I put Kefir in everyday. I've been on Xeljanz about 4 months and the Kefir hasn't affected me or the growth....in fact I have AA patches and they are almost all filled in. I know it's going to be a slow process getting the thickness back because it took 3 years to shed, etc. I would ask your doctor about the nausea....maybe he might have a suggestion for you.
I also take a multivitamin, Vitamin C, D, biotin, Viviscal Professional, Evening Primrose Oil every day.
-
-
Thank you both for the replies, Icarus I do take it before eating usually and great to hear you had almost full regrowth!
The multivitamin I have has everything in it B,C,D, Biotin, Iron, Zinc, etc. The question about offsetting the Xeljanz was just something I was always curious about that if vitamins kinda boost someone's immune system doesn't that offset a suppressing drug? Maybe its a dumb question though I'm not a doctor lol
I'll start taking the vitamins might even help with the nausea, I'm trying to talk to my doctor about the nausea but she's hard to reach sometimes (she works in Columbia in NYC) hopefully it stops on its own.
-
-
I wouldn't take it on an empty stomach. Maybe try 30 mins after you eat?
My doctor is also in NYC at Columbia. Do you see Dr. Bordone??
-
-
Yes! Haha crazy we see the same doctor! She's great she was very positive about this working for me even though I've had AU for so long and said she has over 70 patients taking it without bad side effects which is what I was most concerned about.
And yes, probably better to try after eating I'll do that thank you.
-
-
Also, hold off on any other vitamins, etc. If you're NOT taking them now and you're still feeling naseuos, they won't likely help but might actually hurt. It's best to figure out if the medicine alone works with your body (any medicine really).
When I started, I took out my daily multi, biotin and finasteride. I added them slowly over time to make sure I didn't have an adverse effects.
Good luck!!
We're in good hands with Dr. Bordone.
-
-
Yea I'm gonna hold off on any vitamins until my next appointment with the doctor in a few weeks. Agreed we are and thank you same to you!
-
-
Update...
26 year old female, no personal or family history of alopecia. Became 100% AU in a very rapid/diffuse way from the end of May to the end of July... unknown trigger. Started Xeljanz August 15.
Went from 2 pills for a couple months, to 3 pills for a couple months, then alternating 3/4 pills for a couple months, now I've been on 4 pills a day for a month.
So I just hit 7 months total on Xeljanz.
Just got my blood checked (CBC and full metabolic panel) for the 3rd time since starting the med- all is good!! Side effects: 2 serious colds and some weight gain.
Attached is a comparison of 6 months on Xeljanz vs. 7 months on Xeljanz.
Scalp is starting to fill in.. brows and lashes are still sparse. - Attachments:
-
-
IMG_2376.JPG, 574 KB
-
© 2024 Created by Alopecia World.
Powered by
