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 Jcortez05 on
-
A rheumatologist perhaps ? Your dr will know which tests to order before and while on xeljanz
-
Permalink Reply by James 2me on
-
I was worked up for Lupus that was how they found out I had R A I never took any Meds was always Healthy all of a sudden at age 59 all these autoimmune issues appeared. There has to be an Answer somewhere to what the triggers are that cause this. Or perhaps there is and somebody will loose money if there's a cure.
-
-
I was checked for RA also and that was negative too .. It's so frustrating .. The only thing aside from now my hair thinning is that I've been extremely tired .. I just blame it on having a 16 month old but now that these results came back I'm worried ..
-
-
Hi James,
It is great that xeljanz users are documenting hair loss while on xeljanz. I'm wondering if it gets diverted or something when there is presence of another autoimmune disease?
-
-
I have heard that this is National Vitaligo Day. Do any of you taking Xeljanz for alopecia also have vitiligo? If so, has your vitiligo improved? Thanks.
-
-
Still falling out .. Found 2 small patches also.. Just went to dermatologist yesterday and got a couple injections. I'm sure it was the anesthesia from my dents work Almost 3 months ago but I just don't understand why since I'm on xeljanz
-
-
Kind of seems like any thing can set off the shedding. Anesthesia,stress,an illness, cutting back on dosage!!How is everyone doing that started shedding for one of those reasons did it finally stabilize?We need all the info we can get here to help each other!Was any one successful in cutting back their dosage?Also what ever happened to xeljanz miracle?She texted several times a day for almost a year and then just disappeared off this site.Hope everything is well with her.
-
-
I agree Football Fan, it is really important to hear from those people who have had shedding and whether they were able to get it stabilized.
-
-
Hi Football Fan. I've been on Xeljanz for over a year. I started in May of 2015 and I upped my dosage to 4 pills a day in September because the 10 mg a day just didn't work. My hair did grow back and I get steroid shots every month. My eyebrows though have pretty much all fallen out. It's weird, I have hair everywhere except there. I was universalis since 2013. What's frustrating though is that I get flare ups where I get the itching and prickling sensations when I'm stressed or tired and I lose lots of hair. My most recent flare was a few weeks ago and I had severe burning, prickling and itching on my scalp and also everywhere I had hair. I thought, this is it...I'm going to lose all my hair even while I'm on a high dose of Xeljanz! But thankfully, the hair loss stabilized last week. I don't have any bald patches yet but I have diffuse thinning and I'm worried that if I get another flare, this stupid disease is going to take all my hair this time. I'm also using topical Xeljanz on my eyebrows but I haven't seen any improvement and it's been 4 weeks. I'm not going to complain though, I'm just thankful I don't have to wear a wig for now!
-
-
Bumblebee we both started xeljanz about the same time (end of April 2015) and I am not having much luck growing my hair back and I'm not even AU.I decided to give it one last chance and take 4 pills a day for 3 months. Six weeks on 4 pills now and have noticed more leg hair.Not sure about my scalp beacause I have about 30 percent hair all over next month when I go to the doctors they will be able to tell they have been taking pictures.Have that soft fine white hair on my arms and face still have most eyelashes and 50 percent of eyebrow.Also been using the cream for almost 4 months.When do you take the 4 pills?I spread them out throughout the day.How are your blood tests and how long after taking 4 pills did the hair start coming in? This is my last chance and if it doesn't work soon I will have to give up till something else comes along.
-
-
I found out some information from A reliable source that in clinical trials useing Xelljanz that everybody responded differently. Weather it was dosage amouts or length of time before seeing results. I was not able to get an answer on final results of what happens when the medicine is stopped completely. Good luck to all.
© 2024 Created by Alopecia World.
Powered by
