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 Return_life on
-
I don't understand why everyone is so obsessed with reducing the dosage... unless it is for financial considerations I don't see the reason. having an autoimmune disease is difficult to treat and control, whether it is crohns, ulcerative colitis, rheumatoid arthritis, alopecia or psoriasis...
the product monograph for xeljanz suggests 10mg, this is already low dosage considering how easy inflamation could attack any place because of the amount of hair we have on entire body.
once you are able to grow hair and keeping it just stick to the formula! you can ASK any knowledgeable physician and he will tell you there is NO guarantee your biologic will always work, so don't play with it cause u could definitely regret it... being AU is no fun.
-
-
That makes perfect sense most medications you can't lower once you figure out what works for you. Very few exceptions.
-
Permalink Reply by Suzie on
-
Return_Life, I totally get this! I have been on biologics for RA for over 15 years. Had to keep changing once they stopped working. I do not like taking these drugs, but without them I couldn't even function (eat, sleep, work - what kind of life is that). The last biologic I was on before Xeljanz was Orencia. I was on it for about 8 or 9 months and I felt on top of the world....working out every day, little or no flare-ups so I decided to give my body a break and stop taking it. Well.....within a few months I developed AA (which I apparently had when I was 15 and our family doctor didn't even know it - back in the early 80's.) So I'm telling myself that no matter how much hair I grow back and how much better my RA is, I will have to take these medicines for the rest of my life...just like a diabetic with insulin.
-
Permalink Reply by Xeljanzmiracle on
-
Hi Return Life, I think most people want to lower their doseage because they want to lower their risk of adverse side effects. But u are right, Xeljanz packs a powerful punch for such a small pill!
-
-
but why those antibodies could stop slowly and finally stop?
-
Permalink Reply by dreamscometrue on
-
I know, that's an interesting question, I often wonder how that mechanism will work?
-
-
-
tofa is jak1.3 but aa needs jak1.2 just like vitiligo. That is why some people did not response well.
-
-
Makes sense. Please read this article and the additional reading and research on the top page and tell me what you think:
http://www.regenerativenutrition.com/shop-product.asp?prod=140
-
-
-
I get it. but they should realize that if you lower it you can have severe consequences, a solid relapse or even a new autoimmune disease.
my 2 cents, as long as it works don't change anything and enjoy...
-
-
I agree. Less of any drug would be ideal. I hope I get to a point where 1 pill is all I have to take.
Also, @Xeljanzmiracle, I replied to your previous response to my posting from earlier this month. I've pasted it below:
##
"I haven't been on this forum before. I joined in January 2017 due to my alopecia getting bad this past Fall/Winter.
You are completely incorrect and out of line to accuse me of something I have not done. I don't do such things especially online on a support forum.
I do see you post here a lot. Perhaps you should take a moment away from the keyboard, breathe and come back when you've calmed yourself down. Don't accuse a random person for something they are not responsible for.
Thank you! It's Much appreciated. Remember, we are all here for support. Not drama."
-
Permalink Reply by AlopeciaDestroyedMyLife on
-
That's great news, you look amazing in your photo. I had a few minor patches on my beard but they have always swiftly grown back.
The least I have gone without xeljanz is 1 tablet every other day which maintained my hair well. I am currently on 3 a day along with minoxidil. My hair has gotten better since my last photos but it looks as though I may have male pattern baldness which is not what I was hoping for. I will post some photos shortly.
© 2024 Created by Alopecia World.
Powered by
