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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 JG on
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Hi Katrina,
I started Xeljanz yesterday and was wondering why you saying that Allegra would help it to work? Can it be just any antihistamine? In the last 6-7 month I am waking up every morning with swollen eyelids and puffy eyes. Was thinking is it because I don't have eyelashes and eyes are chronically irritated or is it an allergy?
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I know a lot of people are struggling at the moment and wondering if they are responders. I was exactly in the same position with very little results at the 3 - 4 month mark. It happened for me after that, with most of the results not happening until 5-6 months. Please stay strong - it can take awhile.
today I had a milestone. I went public without my wig. Many people were surprised as I was pretty good at disguising my lack of hair with wigs and make up. I am brave enough to actually post a pic here. I hope it encourages everyone who are taking ages to respond. I won't leave it up indefinitely as I feel a bit weird at having my pic up forever in a day. I know relapse is possible, and I still struggle with pimples on my scalp( not sure if this might be a reaction to minoxil as I've had it off and on throughout my xeljanz experience) and when I get particularly anxious I feel goose bumps on my scalp (I think this is psychosomatic) but so far I am cautiously happy about my success and want to encourage everyone who is feeling a bit blue in those first months.
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hello frida beautiful complete regrowth .. I am 2 months and it still grows but I had an acne outbreak and two days of herpes around the mouth
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Thanks Kevin. I had bad acne first 3 months - I found a face cream with a tiny bit of retin A helped a bit as well as a medicated face wash. I still have pimples on my scalp - could be cause I can't use my retinA cream on it. The worst passes though and things normalised a bit after that first period of time. I don't know about the herpes meds. Unless they activate the immune system too much I don't think it would react but don't know for sure. Hope it passes quickly for you!
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Thank you! I am so grateful that it has worked - and also grateful to this forum which gave me so much info and support! X
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Frida you look absolutely beautiful. All my congratulations to you! I am one of those struggling at the moment - 3 months into Xeljanz with NO RESULTS whatsoever. Thanks for the boost.
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Stay strong girl! I know the first few months suck. Almost worse then before xeljanz- the anxiety and anticipation is painful. Hold on to the fact I was in the same boat. Up the dose and give it a few more months xxx I do really believe it will happen for you xx
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Thanks Kathy! I used to be a long haired lass so it's an adjustment to be public with short hair but I am just so grateful to be in this position. I really want this for all alopecians x
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