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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.
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AW: Other discussions on Xeljanz / Tofacitinib
https://alopeciaworld.com/main/search/search?q=Tofacitinib
Replies to This Discussion
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Permalink Reply by Divya on
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Hi kris,
My parents arnt physicians, but they had an idea i guess how medicines would react..
We mostly read online itself. I strtd tropical rutecil ystrdy, parents it might help to cover patches. Has your strtd on xeljanz??
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No the dermatologist wants to start with cyclosporine and then methotrexate as that is cheaper and she is more familiar with these meds. prescribing Xeljanz is off label, but I think she would be willing to prescribe it for my son. Thanks for answering and for all those who are posting. I read these posts everyday and get a lot of good info and hope.
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oh, got you now... I had tried cyclosporine but that didnt work much for me, but i did grow vellus hair, which fell off as soon as i stopped. Had stopped in 2 months as i developed a lot of acne, water retention.
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So happy for you. My son has been on it for 1 month and 4 days and we are starting to see very light regrowth in his eyebrows and his lashes. Do you remember how long yours took to come back. Thanks for sharing.
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Hi,
Anyone who has completed their Xeljanz dose.. I mean shown full regrowth and stopped using it.
what happens when you stop taking Xeljanz? Does the hair fall off?
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Hi Divya
Are you in the US or India? Just asking coz I'm in India and AFAIK, Xel isn't an approved drug here.
Thanks
FS13
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Permalink Reply by Suzie on
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Can anyone who is using Xeljanz please tell me if you have RA or any other autoimmune diseases as well? I have RA and was wondering how this helped with that as well as the Alopecia.
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Yes Suzie I had sudden onset of A U March 2015 started getting tested for many different things. Diagnosed with RA in jan 2016 started Xelljanz midway thru March 2016 just started my 7th bottle I am currently Takeing the once a day Xelljanz XR I feel like I started seeing better results when I started the XR scalp is Takeing a little longer but everywhere else I have full regrowth as far as the RA goes I can't really tell if it's helping because I wasn't in pain the only way they were able to fully diagnose it was with MRI imageing so as of now no RA symptoms so I guess it's working on that also Good luck James
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Thanks James 2me..I had AA first at the age of 15, then developed RA after my second child at the age of 26. I had to go on Enbrel, Humira and then Orencia. I have had a small patch on and off on the back of my head (not even noticeable, only knew about it from my hairdresser). Then 2 years ago after being on Orencia for 6 months I started shedding a lot and have several patches. I am on the fence about taking another immunosuppressent cause I don't need any more shedding or hair loss!
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I will mention this to you Suzie if it helps my RA doctor did mention that he has a few patients that were not responding to any of the drugs you just mentioned and once they were put on Xelljanz they had positive Results also I remember reading that Orencia is causing problems with hairloss.
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I am seeing an all natural chiropractic health doctor tomorrow to see what my other options are. I have been on Enbrel, Humira and Orencia for over 15 years....but my RA is totally draining me and is very, very painful! Thanks James 2 me.....at least I know I have and option with Xeljanz.
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