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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 Anna on
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I am actually going to see Dr. King on the 26th - and believe me I have a list of questions as long as my arm! Frida helped articulate some of them for me too. Promise to let you know if he tells me anything at all interesting.
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Good luck with your appointment.Hopefully you have some good news to share.
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Hi Anna any good news from Dr. King you can share?
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Oh no that’s not nice. Are you using anything topical that could be reacting? I remember when my hair was falling out I had a burning feeling but once the hair was gone the burn left and hasn’t come back though I sometimes get a crawling feeling- I’m never sure if the is psychosomatic or real- it’s quite subtle though- not painful. It’s strange because your hair is coming back so well, maybe a reaction to something, or just your follicles and immune system having a bit of a war. Maybe some topical anti inflammatory or even an oral one. I was reading somewhere that some guys actually take aspirin to help with male pattern baldness as supposedly it reduces inflammation which plays a role in most issues with hair fall. Maybe aspirin would help a bit. Can’t imagine that’s very good for you mentally. Hope it resolves Asap....
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Ok so this a weird question - but I noticed there is a Jak 1 inhibitor for dogs. Has anyone heard of it being used on humans and would it be safe to use on humans? It’s used to treat dogs with dermatitis and inflammation of the skin. It’s called oclacitinib and has a reasonably good response in dogs (> 91% saw improvement).
Here is is an article on it. https://onlinelibrary.wiley.com/doi/full/10.1111/vde.12194
I cant find details re price and availability but am on the hunt now.
i am curious because I notice dogs can be treated with cyclosporine and I have noticed that my dogs have been prescribed human medication (zofran, antibiotics, codiene etc) to treat various issues over the years...
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Thanks Kevin, it’s price is reasonable- compared at least to some of the other Jak inhibitors. I found this article about combining tofacitinib with olcacitinib in dogs. Interesting. The warnings re side effects are similar to xeljanz from what I can see via good ole google and ncbi articles- a bit sciency for a humanities brain like me to properly digest and interpret though they mention that benign growths do increase in animal studies, and large doses ( like very very very large) can be toxic to rats.
It it would be interesting to know what conditions it could assist with and what dose is needed. Moments like these make wish I’d paid more attention to chemistry while at Highschool ( did humanities at university- so highschool was it for me re chemistry. The article is for people with eczema not Alopecia but I found it interesting.
Also a disclaimer- do not do this based on my ramblings, the lack of human studies (that I can find at least) kindof puts me off but It’s something to think in terms of jaks and potential pathways to explore with the docs and scientists.
https://nationaleczema.org/dogs-shows-us-how-to-atopic-dermatitis/
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Hey guys,
I feel like I'm falling back into my slump. My beard is getting that burning prickly feeling again, my eyebrows feel itchy my neck feels irritated.
But no hair is coming out. I'm still taking my xeljanz and I've been on it for 5 months and 3 weeks.
Could I just be freaking out?
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Hi Newjack - I couldn't say unfortunately because I am at 5 months on a very very high dose of Xejanz with no results whatsoever - as shiny bald everyhwre as it is possible to be. So speaking from no knowledge whatsoever (and a broken spirit, let's be honest) I would say that as long as the hair is staying put, the prickly sensation may just be caused by your worry that this won't last. Have you had full regrowth?
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At 5.5 months I have full regrowth but my hair is still getting thicker and one spot is still there. I'll probably get it injected.
My head is completely covered but not nearly as thick but all these sensations I'm getting scares me.
I'm sorry you're not having success. Have you tried steriod pulsing?
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Hi Anna, how much dose are you taking now? It takes time, hope you will see result soon,
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