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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 Patchesforlife on
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i totally agree. It honestly pisses me off the bald beautiful slogan
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I actually think some people are really good looking bald BUT it becomes a slogan that gets used against people seeking treatment. It's like when people say "it's only hair" when it's something that is a key self identification aspect of our lives. Plus it's no fun having people always walk on eggshells around you cause they think you have cancer and are about to drop dead! It's not only hair- it something that builds our identify and impacts on all our social interactions and confidence. We as humans want to belong, it is a key trait of why society works. One of the worse things in life is to be labeled or treated as "the other". This is part of why it sucks soooo bad to have alopecia - we feel like the other, and we feel no sense of control over our future and place in society.
My regime is is on the more aggressive side but I have a son and daughter. If they get this disease I want to say to them- mummy tried x, y, z and this is what I found successful and what impact it had on my body Ultimately they will choose how they treat it if they get it, but I would feel far more comfortable having tried all these things to be able to guide them and advise them.
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I agree Return to life. There are so many people out there who seem overly cautious when it comes to immune suppressants. Physically I feel better on them and my bp is lower. Maybe placebo affect.... but if your immune system is too strong (which seems to be the case) then they can be a godsend. Plus xeljanz is "targeted" which means it's less damaging overall while still being effective from what I can understand.
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Permalink Reply by Toxicmosquitoaf on
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I never said bald is beautiful.. I dont like that slogan at all, because to be honest some people look ugly af bald.. But im beautiful. And being tanned and shreded makes me more beautiful hehe.
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Hi everyone, think this is some good news for everyone waiting on this..however I still think it’s a few years away.
if anyone knows more on what this means could you please expand on it ?
https://www.businesswire.com/news/home/20180112005098/en/FDA-Grants...’
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I also think this is good news but it was followed up by this:
https://seekingalpha.com/article/4138235-concert-pharmaceuticals-ma...
Not an expert on this stuff by any means but I think the patent office basically denied Concert on their moderated version of ruxolitinib which would essentially deny them exclusivity for developing and spending R&D dollars on this drug for AA. Think I read that the company is going to continue with their plan to get it approved regardless. Good news in that there would theoretically be competition and therefore lower pricing for the drug if and when it comes out. Bad news in that there's less incentive for Concert to get this approved in the timeframe they would have otherwise.
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Yeah it's a bit of a double edged sword- good that it may reduce prices, bad it might mean they lose motivation- but it's so expensive right now that there is still a pretty big price window for them to play with! Fingers crossed
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Thanks cmdd20,
They might now offer whoever has the patent rights for Ruxolitinib $250 million a year plus royalty fees. So in affect would benefit both companies. I really do hope they can come to an agreement if this can help as a viable treatment for alopecia.
But let’s say they agree and with the fda fast tracking it .. what does this mean as it’s in phase 2?
you think it could be out by 2020?
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No idea. Would just be guessing but you'd think that it should go through a quicker than usual phase 2 process since 1) it now has fast track status and 2) the drug (or a form of it) has been previously approved by the FDA so they should be at least familiar with the safety profile.
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Here is the best I got on my scalp after 9 monthso on Xeljanz20180117_180942.jpg.
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