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 Christopher's_mom on
-
I don't know anything about stem cell therapy. I did research into it when my son was initially diagnosed and nothing seemed to be working for him. There are a few stem cell therapy clinics around the country, but I have to ask, if it's such an effective method to cure disease, why are they all in stand alone clinics instead of in research hospitals? I don't want my son to be a guinea pig. I do know of a lady who had stem cell therapy for a severe condition and it reversed and then slowed down the disease dramatically. I don't know where she he it done, though,or if it's a researched and accepted treatment within the medical community.
-
Permalink Reply by serg navaro on
-
Hello! I have question for those on 15mg a day, how do you take them? Do you take all 3 pills at once or split them? I've been taking 2 in the morning and 1 in the afternoon.
-
-
Hi all. I came across this piece of news Hcell from http://www.hcellinc.com. they claim they can restore hair for AA patients. I tried to understand what they are doing but couldn't. Does anyone know what this Hcell is?
-
-
It's probably just a money making scheme.
They only thing that will cure alopecia would be either stem cells or genome therapy. Which are a few years away yet .
I just hope that us sufferers can get a safe treatment soon. Whether that be jak inhibitors or something safer.
-
Permalink Reply by ChrisPowers on
-
Here is their patent, the only thing they really mention of substance on the entire website:
https://www.google.com/patents/US9173921
Sounds like hogwash to me, and honestly has all the earmarks of a scam, but it's very difficult to discern between scammers and honest people with good intentions who are too susceptible to confirmation bias for their own good. And a condition like alopecia, characterized by periods of spontaneous remission, is rife for just such self-delusion.
Of course, there's always the possibility I'm wrong and this is a miracle breakthrough, but I find it highly suspect that the same technique they claim is effective in treating alopecia areata is also claimed to be effective for androgenic alopecia. These are conditions of vastly different etiology.
Incidentally, patents are regularly granted for dubious claims, as the standards for acceptance are far from rigorous. That a patent was granted tells us nothing about either the veracity of a claim, nor its feasibility.
-
-
The other thing I forgot to mention is the possibility of patent trolling. In this case, they may have established a web presence simply for the purposes of providing evidence for potential future patent lawsuits should any real pharmaceutical company uncover an actual effective treatment using such materials (bFGF, platelet rich plasma, etc.) in the future. They could then claim patent infringement and "sue" that company (in reality, they will accept an enormous settlement and be on their merry way, with just you and me and the rest of us left to pay for it in the form of higher drug costs).
Is it any wonder, in light of such things, that drugs cost what they do in this country? It is an argument, however, for reform of certain aspects of the legal system (English Rule, anyone?) that, along with tort reform, actually have a real chance of lowering health costs, unlike some other interventions that shall remain nameless.
But, I digress.
-
-
I emailed the contact- he emailed me back- seemed nice enough, didn't explain the science but at this point I think they are looking for financial backers as opposed to patients. In Korea it costs 9k us and include 3 treatments of injections over 3 months. I have no idea if it works or what the science is but the guy was pleasant and wrote back without any real sales pitch so at least that was nice.
I'm about to start Xeljanz so right now that's my main focus but any new treatments or THE CURE are always interesting to read about.
-
-
Thank you! So he didn't explain what treatment is? How about was it tested on alopecians?
-
-
He didn't explain the science but I'm going to google around to see if I can see any info of the goings on in South Korea. I think at this point the website and the pitch is more to people who could invest as opposed to end users. Ie investors and dermatologists who would seek to franchise or buy into the company.
That said he didn't explain much of the science but as I said he definitely wasn't trying to scam the individual- just looking for backers. To me Hcell points to maybe a stem cell/ jak inhibitors hybrid but this is just my impression from reading through all the material on the site.
I said if I had 8 million to invest I might help
Him out but currently can't really help as I am just an average Alopecians trying to find a cure.
He did seem very nice and not swarmy but I know we (sufferers of alopecia) have trust issues and rightfully so.
-
-
Ok read through the patent- mainly seems to be related to Platlet rich blood injections- not jak inhibitors. It seems like it might struggle to work on AAs As I can't see how it would overcome the autoimmune rejection. I wait with baited breath... hopefully he's on to something but I'm sticking to Xeljanz as my next treatment plan.
Anyhow the guy did seem very nice and the patents had a few case studies that looked interesting.... hopefully if it does work we will be hearing more of it in the coming few years.
-
-
This Shampoo was very useful in retaining my Hairs during Alopecia. i now only use this shampoo.
You can get it from Amazon http://bit.ly/AlopeciaShampoo
It will definitely help you.
© 2024 Created by Alopecia World.
Powered by
