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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 Return_life on
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the 7 months 10mg a day only last month 15mg a day I had only some body hair regrowth and my nails growing back cause I had severe nail pitting. nothing significant on my head. my Dr told me that I was a non responder so he advised me to stop. another dermatologist told me same thing...
now am doing high dose. I started again... very high dose. like really high... and guess what? 10 years AU... after 3 ********* months I got eyebrows and eyelashes without anyou spots. they are not as dense as they use to but they are no empty spots they look 100% normal. body hair grew back also.
head is covered with hair but lots of vellus and some place not dense at all so still waiting to see. I was curious if people on xeljanz had full density from the start or is this something that requires time... not the bald spots but the density.
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Good to hear you are getting results. Is your cholesterol in check. Mine is higher but within range. I can't afford to step off the kaiser plantation. I won't be surprised if my xeljanz experience merrors yours. I expect to be at 2 pills for sometime. I bet it takes at least 4 pills a day for me to get results. If you are comfortable let me know your pill count. If not I understand.
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yes my cholesterol increased on xeljanz. I try to keep the diet very clean. keeps me cut also so that's an upside.
we are all alopecians, so why not sharing my dosage with you... it would be extremely selfish not to share what worked for me after 10 years of AU. when doctors told me I was a non responder of xeljanz I couldn't accept it. so I did whatever it takes. so 30mg... even more sometimes. much more. and at the beginning I did an induction dose. patient of crohns disease and UC do this often with biologics. I did same strategy with alopecia. I tried xeljanz the way the Dr told me to and had no results for my hair and eyebrows and eyelashes. so if I had to try again why would I do it the exact same way? can't do same and expect different results.
we alopecians needs to share data in order to educate ourselves. so many snake oil seller trying to take advantage of us on internet, we should keep us updated on our progress to increase knowledge on how to treat this disease. Thank God for this website.
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Wow 30 MG a day. Does your insurance cover cost? I don't think Xelsource will give out any more than 11 MG a day. Please correct me if I am wrong.
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correct insurance won't cover. in Canada insurance won't cover 1mg.
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Permalink Reply by Rascalx2 on
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Hey return to life, I also have ulcerative colitis, I only started to see some results w xeljanz when I went up to 20 mgs a day. It is definitely helping w UC as well. I was on 6 mp ( mercaptopurine) for years for UC, i scaled down on that med over time until I went off it all together. I lost all hair in a matter of days few months later. I think that perhaps 6mp was keeping alopecia from happeneing, it is similar in the way it suppresses immune system.
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Return_life my hair now is much thinner than what I had before AU.
I'd say I got back about 1/3 of density.
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same as me... 1/3.
I wonder if it will go back to normal. we need more patient to report I guess.
obviously this is for AU...
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Permalink Reply by sadele on
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Has anyone heard from Susan McAdams? She started a different thread and got good results... I reached out to her about a month ago and haven't heard anything... just curious how she is doing!
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is it apremilast?
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Hi sadele Susan and I would meet for lunch every couple months haven't heard from her in 6 months so I emailed her A couple months ago.Haven't heard anything back and she usually responds the same day.Hope she is alright.
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