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.
-----------------------------
Related Post on Alopecia World:
Replies to This Discussion
-
Permalink Reply by blondfrog on
-
wow your husband was really handsome really scored the jackpot with him :)
-
Permalink Reply by Xeljanzmiracle on
-
Thanks, but even more important was when my hair started falling out my husband was a MILLION percent supportive. That is when I knew he truly loved me. He said "You know I didn't marry you for your hair."
-
-
Hi, please advise if there is anybody has been cured by the Xeljanz? I mean getting a permanent hair after stopping the medicine without any relapse!!
-
-
Can this cure it? Highly doubtful. It is a treatment and not a cure. It is, however, autoimmune...so anything is possible.
-
-
Anybody knows if there is a relation between gluten and Alopecia ? Could a gluten free diet helps the remission of alopecia ? It seems that both are autoimmune.
-
Permalink Reply by Susan McAdams on
-
Can Nicholas and dr. who PLEASE REMOVE THEMSELVES from this discussion board? Every day, I wake up with several email alerts for new responses on this forum, and it is the same back and forth feud between these two men. I COULD just remove myself from this discussion board, but I am trying to keep tabs on other Xeljanz users' PROGRESS. I am not interested anymore in people's attempts to get Xeljanz illegally in other countries. I did much reasearch on the topic, and it is dubious (and risky) at best. Perhaps someone else can start a discussion board on the topic.
My goal on Alopecia World is to discover and share valuable information so that so many of us can explore the efficacy of Xeljanz, share possible side effects, and celebrate those who are finding success with regrowth. This is NOT the place to voice grievances and defenses over a botched delivery from Eastern Europe.
I really want to stay in this discussion board to learn of others' Xeljanzz experiences. I also started a new discussion board for Xeljanz users called (Xeljanz Users...Let's Stay Connected Here in 2016." It is meant to complement this discussion forum so that those of us on the drug can monitor closely each others' progress. No one here is interested in illegal activities. You two men have taken this discussion group hostage. Please cease your comments or I will, sadly, have to remove myself from this group.
--Susan
-
-
no clue why you are coming up with this now. but now that you did : Nicolas and I haven't talked about the subject for several days as you couldve seen easily by just reading our message's posting dates. In fact he received his xeljanz last week, on Thursday.
Btw do you get any points or something else for trying to get people to post in your Let's Stay Connected Here in 2016 thread. almost on every post in this discussion you say the same, and yet you are complaining about others off-topicing this thread?
-
-
Thanks Dr. Who. Let's not even reply on her discussion anymore. Singh has a discussion titled "Calling Out to Those Taking Xeljanz" where he addressed some of the same questions as well. We can speak freely on his or this one. Personally, I just try to help people with their questions no matter what topic it is. Yes, I'm on Xeljanz, and it is working for me, but there are other concerns people have and if I can help them I will.
-
-
No Worries, Dr. Who. I am no longer following this post. It became too diluted with side issues. I only logged on to read progress on the woman who was having a recent relapse. I made my comments about you and Nicholas because you both launched a personal battle on this once very informative discussion page--going back and forth over who screwed whom over because of an undelivered purchase from Turkey. I honestly don't thing the author of this discussion set it up so people could fight over personal grievances with one another. The problem for the rest of us was, every morning we were waking up to multiple emails alerting about new posts on this discussion group. And for a couple weeks, they were related to your battle with Nicholas.
Glad you two got things resolved.
Regarding your question about whether I get "points" for mentioning my other discussion group about Xeljanz. The answer is an obvious NO. I only have been throwing the discussion link out there so that those who want to continue to share experiences with symptoms, relapses, successes--all the issues that will be invaluable information for the trial doctors--have a chance to do so without sifting through personal battles about going to other countries to buy the medication. I am not pulling anyone's arm about reading my discussion page, and frankly, I don't care if anyone else here does. The sole purpose of starting it was to have a streamlined forum to talk about XELJANZ and its effects--not diet, not other countries, etc. No other motive than that.
-
-
Katiegirl, good news! I called Xelsource this morning and because my doctor upped my doseage to 3 pills a day, they ARE GOING TO COVER IT ON THE HARDSHIP PROGRAM! To accommodate the higher dose, they are going to ship me 2 bottles at a time (120) so that I have a 40 day supply and don't run out. I wanted to share this good news with you and others on the Hardship Program who might be worried about obtaining more FREE Xeljanz at a higher dose.
-
-
Katiegirl, how many a day are you on now?
Disclaimer
Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.
© 2025 Created by Alopecia World.
Powered by
