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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 bibby on
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Hi Kevin , Sorry to segway from the xeljanz focus but can you review your opinion on the interleukin option ? Do you know if it was a placebo or the real thing? Is there going to be an official final results of the study by the French professor soon ? Thanks in advance
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after a few years I had some hair that has always remained and new ones that grow I would say a hundred my nails are in very good condition, yes I have had the treatment.
I would say that interleukin has regulated a small part of my immune system,
That's why I wanted to start xeljanz associating xeljanz that could speed up regrowth and can be maintained regrowth
for two weeks on xeljanz I see hair grow and eyebrow and beard.I can not tell you the final results because it is still in test.
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Thats great kevin, I developed Alopecia Areta on my head and had a full blown flare in September 2017 and began Xeljanz in January.
I am still in a flare and my beard and eyebrows are still falling out. My head was already completely bald and I noticed hair in 2-3 weeks as well. Maybe I'll take longer on the beard and eyebrows because it's still active at those parts of my body...
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That's a great result Kevin! I think maybe the interleukin has helped too. Keep us posted! It'll be interesting to see if the interleukin helps in long term remission once xeljanz brings the hair back.
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She's a keeper! I'm pretty sure you'll have great coverage on your scalp by May too with your current response. And I think the beard and brows will stabilise soon as well. I bet your derm will be impressed with progress!
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My dermatologist was very impressed she couldn't believe it with just the standard dose I had these results.
She said not to worry about the beard or eyebrows as they will soon follow. She said word for word
"Youre the reason why I became a doctor to see progress like this and help. You don't know how happy this makes me feel and your progress has made my entire day. "
She ended up injecting my eyebrows and didn't touch the beard because she said it looks fine and will hopefully kick in soon like my scalp.
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Yay!!! Fantastic! I actually had an immunologist appointment today and he was also blown away with my response(he last saw me 3 months ago when progress on my scalp was like nil). Yay for tofacitinib.
so happy for you Newjack!
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Hi Frida you are sure which dose right now. for two weeks I am on 10 mg I have gained twenty hairs a few hairs of beards and two eyebrows lol but I am already in the regrowth period because interleukin maintains the few hair that I won
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Hi All,
It's been a few months since my last post. My AA had cleared up. About 4 months ago I reduced my Xeljanz to 1 pill. About 1 month ago I noticed a spot :(. So, I'm back on two, no shedding and I went to get that one spot injected. Hopefully it will grow back quickly.
Also, inthe winter, I feel like my AA gets worse.
Anyway, reason for my post is an insurance question. My insurance denial was appealed and overturned by the state (NY) back in June. So, my prescriptions were getting filled no problem. However, recently my doctor went to refill my prescription and they denied it!
Has this happened to anyone? I guess appeals expire?
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Icarus,
I can't see them doing that, maybe call the doctor and find out why.
I am going through NYS external appeal right now and I'm extremely scared.
Did you get xelsource previously, if so, did they force you to do the NYS appeal? I am so lost with this and just want it one way or another!
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Okay so I got some clarification from my insurance and from the state. Apparently, pre-authorization even overturned by an appeal still has a limited time that it's good for. In my case, it's only 6 months and then I have to go through the whole appeal process again. However, the likelihood that the appeal will fall in my favor is there a high considering it was already done. It's a really stupid system but then again that's America's health care for ya.
New Jack, I get being nervous about the appeal. I was too. Have you submitted all of your supporting documents? I have some studies that I can email you that included with my package and I believe it helped to get my xeljanz approved. While I was waiting for my approval I was using the co-pay card. That was last year so I think what I'm going to do now is use the co-pay card for 2018 to get my three months of xeljanz while I deal with insurance.
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My doctor submitted all the research and she wrote everything out for me. I see a doctor at the Columbia dermatology in NYC. She has handled pretty much everything. What insurance do you have? I have Aetna, they have been torturous.
Have you ever gone through the xelsource route?
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