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 IcarusAlopecia on
-
Your best bet is to Google her and call her office.
-
-
**4 Month Update***
Hi everyone. Can't believe it's been 4 months since I've started Xeljanz. I've experienced about 90% growth on my scalp, lashes and eyebrows. (photos attached)
Side effects:
1. Maybe slight weight gain? like 5-7 lbs. I'm also not really eating healthy (high protein but not the lean kind..oops) at the moment (lots of take out) because I'm renovating my home and my kitchen is unusable, lol.
2. My bloodwork came out fine. My BUN was high but I am on a high protein diet due to a fitness program I am on (which contrary to reason #1 still has me feeling and looking 5lbs over...so I'm pretty sure it's the Xeljanz)
No tiredness, no irritability, etc.
I am socially drinking alcohol which I really should cut back. I will make more of an effort.
Shedding and Stuff:
I've noticed WAY less. I get about maybe 5-10 hairs now in the shower. Back in Jan/Feb I was getting dozens. It was scary but then I just got used to it.
How am I getting Xeljanz?
Ugh. Well, my insurance, no surprise, denied my level 1 and level 2 appeals.
I am taking it to the state level appeal where I will attach a letter and tons of clinical studies. I did this for my Jaw surgery and they overturned the denial. I'm praying this will be the case.
I got 3 months of X for free on the co-pay card and just paid 3k for this month.
Photos!!
1. February back and April 28 back. HUGE difference! I'm so happy. Even my barber, who doesn't mean to, but always points out my bald patches, was so happy and then decided to shave my hair short, hahaha.
2. Eyelashes and brows. FULL eyebrows! So happy. As a guy, I tried to draw some eyebrow over the summer and someone called me out on it. It was really embarrassing :(
Lashes are all in but not as thick as the other eye. I'll take it though. The balance of my face has returned.
3. I just took a photo of the top. I had slight male pattern baldness. I use rogaine everyday since I was like 21 years old. I'm shocked it's so thick up there?!
Anyway that's my 4 month update.
Keep hope everyone! I know this doesn't work for everyone but this hopefully shows that it kind of works. Also, keep your fingers crossed that the state overturns my insurance and I can keep this up.
Sending you all big encouraging hugs!
- Attachments:
-
-
IMG_20170220_093421.jpg, 112 KB -
eyelashes.jpg, 292 KB
-
top.jpg, 1.9 MB
-
-
-
Thank you! I am but also really hoping my insurance decision gets overturned by the state or I will have to stop taking it.
-
-
looking good buddy
-
-
Thank you!
-
-
Amazing!! Can I just ask where you AU or had male pattern baldness ? That growth is amazing for 4 months happy for you! :)
-
-
For 9 years I've had Alopecia Areata.
Well, actually, it started on my beard. Then it hit my scalp. Just circles. Then about 3 years ago my eyebrows and patches. Then this past fall it got really bad and the circle turned into huge patches as you can see from the photo of September.
In terms of male pattern baldness. I do have that to but that's just herditary. It was a bonus that xeljanz filled in my crown.
Side note and kind of funny; My ear hair and nose hair grows at an INSANE rate since starting xeljanz. I have to keep that in check or I look like an old man! hahaha
-
-
Hahaha! And nice one for the info! It's good at the 2* 5 mg. keep us updated. Am going do a separate post for people on xeljanz who have been on it over a year or more so everyone can see where there at or maybe fit in. As lately a lot of people are reporting shedding or more.. Just trying to see if xeljanz is a viable treatment.
Kind regards
© 2024 Created by Alopecia World.
Powered by
