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 Suzie on
-
It looks great Jcortez05....are you on Xeljanz? Or is it just coming back on its own?
-
Permalink Reply by Jcortez05 on
-
I am on it .. I haven't tried to see if it will grow on its own but I will once it gets long enough .. I think it will grow on its own I Gino it was just severe stress and surgery and possibly even the foods that I'm allergic to and continue to eat.
-
Permalink Reply by James 2me on
-
Looks Great J Cortez I buzz mine off every month beings it is patchy I guess it's Ok. It seems to come in a little fuller each time. You're lucky that YOURE hair color is dark mine is white and oddly enough my arm and leg hair comes in white but then slowly turns black
-
-
Well when I lost it all originally it came in white and very fine and eventually got pigment and thickness
-
Permalink Reply by Giusep on
-
Hey All- I just wanted to give everyone an update on my wife's progress/ minor setbacks. My wife recently came off of xeljanz after taking it for almost two years and experienced 100% regrowth. She recently came off of xeljanz for a little less than a month and shortly after that her hair started shedding like crazy. We recently notice 4 bald spots, which can thankfully be covered by her hair that didn't fall. As of now she is back on 2 pills a day and her hair continues to grow. We will continue to monitor the grow in the spots that lost hair. I wanted to give everyone an update since I know a lot of you guys are experiencing similar stories. It's really sad because she was finally back to the old girl she used to be before this whole Alopecia thing rocked our world. She has been really upset lately because she was looking forward to coming off of Xelianz and to starting a family. She is also really concerned about passing this on to our future children.
-
-
Hello thank you for your update so is the case for all the world to the stop of xeljanz all but falls me the worst is that even while taking xeljanz the fall can occur, the health of your wife is good for the long term this can be really dangerous?
-
-
Sorry to hear that Giusep. Can you give us some other information....Like does she have any other auto immune disorders (i.e. RA, Lupus, etc.). Also, has she tried to slowly get off, like using 1 pill a day instead of 2 or did she just quit all together? This is so disheartening.
I am so confused because as a teenager I lost quite a bit of hair and took nothing because this was 30 years ago and no one knew what I had and it all grew back within a year on its own. Fast forward 30 years later and I now have RA and have been experiencing AA for 2 1/2 years. It started as 1 small spot and now has turned into several and it's very thin. I started Xeljanz to help it grow and to treat the RA, but now I am getting pretty worried cause I don't want to be ono this for the rest of my life. Just wondering how it grew back years ago on its own and stayed into remission until 2 years ago?
-
-
Hi Suziey I also have RA and alopecia Xelljanz is working well for both diseases I plan on just staying on the Xelljanz for as long as it is obtainable to me. All the RA meds have the same risks I would rather take a once a day pill then have the meds infused into my veins. For the people who are Takeing it alone for alopecia there seems to be a lot of second thoughts but beings you have both conditions the benefits do surpass the risks. Good luck to you. James 2me
-
-
Hey Suzie, Yes I forgot to mention that her doctor had her taper off xeljanz over the course of a moneth. Also, my wife does not have any other autoimmune diseases. She just has really bad allergies to animals.
-
-
Thanks Giusep for responding.
Does she take any supplements? I have been taking several supplements a day and I don't know if they are working or not, I just figured they wouldn't hurt me. the hair I have on my head is growing longer, but it's the follicles that have stopped growing that I really worry about. I wonder if just 1 pill a day for a while would help.
I am questioning so many things. I was on Orencia (a strong biologic for RA) and I felt so good after taking it for several months I got off of it. Then my RA started to flare so I began taking it again. Then shortly after that I started noticing the patches. Maybe the Orencia caused it and maybe it was from starting and then stopping, then starting again. But once I started shedding a lot I stopped all together thinking the Orencia caused it to begin with. I just started Xeljanz last Wednesday. I still have a lot of hair, but it was thinned out drastically and I have numerous patches that I have been able to cover up unless it is windy, then I have to use toppik hair fibers. I, too, have not been the same person since this all started. My husband has been very supportive, but just doesn't truly understand (which I really don't expect him too).
-
Permalink Reply by Xeljanzmiracle on
-
Giusep, I'm SO SORRY about your wife's hairloss off of Xeljanz, but really folks, let's remember that we have a disease. Xeljanz is not a cure, it's a treatment. We all got on it to regrow our hair, and if we stop, the hair WILL most likely fall out again. So Guisep,you and your wife have a decision to make right now: Get off of Xeljanz to start a family and perhaps nurse your baby, or stay on it to regrow her hair. For the safety of your child, your wife can't do both. If I were her, I would choose to have my child and nurse it and go back on Xeljanz later. The joy that a child brings to you is surpassingly GREATER than our outward appearance. Most likely your child will not have alopecia universalis. No one else in my family has it, only me. Best of wishes to you and your wife, whatever you decide!
-
-
Mtran, this is for you. Because I can't upload pictures in private messaging: This is how I look right now. My hair is long enough to braid extensions into it. Singh, I sent you two inbox messages, but haven't heard back from you. My phone was lost and I had to activate another one. You can What's App me on the same number you already have.
- Attachments:
-
-
IMG_20160627_145034.jpg, 610 KB
-
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
