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 Rach1992 on
-
I'm pro Xeljanz because I'm stoked for the cream form. I'm sure most people, if they thought about it, should wait for the cream version because it has nearly no side effects. Drinking alcohol and doing other drugs is a non sequitor-it's unrelated. I'm sure most people don't read the bottle JUST LIKE no one reads "agreement clauses" on website and when downloading apps on your phone. Like I said- I'm just spreading awareness. Happy New Year.
-
Permalink Reply by katiegirl on
-
I think Rachel brings up some really good points and I understand where you are coming from rach. Xeljanz miracle is correct that mostly everyone hasn't reported any side effects. I think what many of us have to be worried about are long term side effects. That 2% chance of getting an immune cancer sticks in my head every time I take that pill. For me though having hair has been worth the risk for me .. Everyone has to make that decision on their own. I don't think there is anything wrong with people having negative feelings towards xeljanz.
-
-
Also, I think that many of us Aren't experiencing many side effects because our immune systems are TOO strong. Hence the reason for this a awful disease. Xeljanz does alter the way our immune system works and it targets all of our T cells
-
-
Thanks for understanding where I'm coming from, Katie :) I don't want to hate on it, because I would take it in a heartbeat if my conscience/intuition would let up (plenty of cancer in my family, too) but I also understand taking the drug. Plenty of drugs have bad side effects and people take them every day. These side effects shocked me at first though and given how many people were taking the drug on alopecia world I assumed some people probably don't know the side effects. But it's all about informed consent as they say! Good luck - I hope all your hair comes back and I hope you're keeping up on your bloodwork :)
-
-
You are right, it is all about informed consent. No one can pressure you to take this drug, it's a personal choice obviously. And if you have negative feelings towards it you have the right to - this is an open and friendly forum at least it should be. My doctor sat me down before starting it and said straight out that it could have a lot of potential side effects and she explained them all. but she also said that I am young and mostly won't experience any. She did however say though that we need to worry about long term effects. On that note though, I have been on xeljanz for six months now and went from Almost AU to complete regrowth. My wedding is in June and I am so happy that I will have hair for it!
- Attachments:
-
-
image.jpeg, 861 KB
-
-
-
that is very exciting to hear. also all the hair (brows, lashes, head hair hehe) looks amazing! seriously though can't wait for the topical version. it should come out soon too and you can always switch to that! congratulations on the wedding! :)
-
-
This brought tears to my eyes.... Did you really regrow all of that in six months? So beautiful.... Did it start to grow back patchy or full coverage from the beginning?
Thank you
-
Permalink Reply by Xeljanzmiracle on
-
Yes. You can read my discussion "From Totally Bald to Regrowth in One Month!" and see all of my regrowth pictures for the last 6 months (yes patchy) on the front discussion page right now.
-
-
Rach1992 I genuinely understand your concern but do me a favour and inbox me and il tell you exactly what my doctor told me who is specialised in the skin and alopecia department. I can't be bother having a debate so negative on Owens post which he has not only for himself but give hope for everyone else . So plz anyone inbox me and il give you my opinion with some facts and you give me yours which even make me understand your opinions ! And no I am not one of them people who will do anything for my hair back as I study a helathy background. Look forward to your inboxes xx
-
-
I don't want to debate. I only posted to spread awareness for people reading the forum because most of the readers on this forum are either taking Xeljanz or are considering taking it. No harm, no foul. The reality of the situation may not be a popular thought, but it's an important consideration. Take care
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
