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 SarahJean on
-
Yes when it started growing back it was white and really wispy. It thickened and pigmented as it grew longer.
-
-
Yay! Brock you are on your way to recovery. Many of us start with white fuzz which gradually changes into a darker colour (mine took about 6 weeks once it sprouted). It maybe a slightly different colour or texture than pre alopecia, mine is curly now (was straight) but all hair is good imo!
-
Permalink Reply by Sad_Rapunzel on
-
start to assuming all these posts are just an ad for Dr King.... :(
-
-
I have never seen Dr. King. I wanted Xeljanz as soon as I saw an article about it, I just am lucky enough to have arthritis so I was able to get it for that. If you can call having arthritis lucky. Even then I have Psoriatic arthritis not rheumatoid so i followed the trials and as soon as it got FDA approval for my arthritis i jumped on it. Otherwise insurance would not have covered it and it is waaaay out of budget to pay out of pocket, if my doctor would have gone along with prescribing it off-label.
-
-
Woow! don't be so agressive. I have a lot of bad health issues aside of hair loss as well.
I just asking because it seems like nobody who take that medicine sees any other doctor except Dr.King.
Also, DOES ANYBODY HAVE SIDE EFFECTS?
for example, as a side effect they mentioned hyperlipidemia, and I already have it. Will it make my condition worse?
-
Permalink Reply by Jcortez05 on
-
I’ve never met with dr king .. I lost all of my hair after I had my son 4 years ago a few months later I saw a rheumatologist who was able to give me a script for xeljanz insurance covered it but then my job switched incuramxe companies and they didn’t cover it anymore and I applied for financial assistance through xelsource and got it so I got my medicine for nothing .. my hair started growing back immediately and I was not even taking it as prescribed .. I took it maybe 2-3 times a week bc I wanted to see if it would grow back with as little medicine as possible .. I then got pregnant and stopped the medication gave birth last month so I won’t know if it will fall back out u til about June ... I do have like 8 bottles of xeljanz left over although it is expired now but I think it still works even expired as most medication does maybe at 80% and not 100%
-
-
Well, in your case (after giving birth) your hair would grow back anyway. it's very common thing for post prenatal. So you would be good even without expensive pill.
-
-
No I lost all of it after giving birth like completely bald even my eye brows I had to get tattooed that’s not normal , some post partum hair loss is but not to my extreme
-
-
Never seen Dr King, only read a lifetime worth of studies, some by him and some by others. My fervent support of Tofacitinib in no way is support for Pfizer or Dr King. I just wanted something that worked - regardless of who studied it and in my case it worked. I have my own doctors who monitor me and they are not really affiliated with anything other than being doctors who are compassionate and willing to research new medication as it becomes available. Honestly if someone told me and had valid scientific studies that rotten eggs treated this condition I would be having them for breakfast, lunch and dinner.
-
-
I wish I'd have these kind o doctors... It seems to me that they all just treat you by some routine medicine and don't want to think out of the box...
I can't look in the mirror, and I have read every study and research I could possibly get online. There are no hope. Really. I will never have my thick heavy hair back... I am really suicidal and can't deal with it.
But I still don't want to start minoxidil or rogaine, which are only one options for any dermatologist....
© 2024 Created by Alopecia World.
Powered by
