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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 singh on
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I agree Jen I don't trust the FDA or most pharmaceutical companies as most of them are in it for profit only ! But unfortunately this is how the world revolves over money and propaganda! However this truth is we can say cigarettes and alcohol have killed more people than xeljanz and any other jak inhabitors put together and there is no denying that. Yet the government has not banned it or bought out much study on why etc because it makes money.
I think if people stop buying hair products like laser cap etc the cure or treatment would come out quicker bcz they would want to make up there money in the alopecia market.
And alopecia although it may seem it doesn't affect the health of a person should not be ignored as it is an immune disease and can lead to other diseases If left untreated I.e rumotoid arthritis.
Some people think it's just hair loss but the reality is there something wrong with our Immune system that cannot be ignored and does need to be cured and treated.
Sorry if this has been a long read people am
Just making a valid abs realistic point whichever side you want to look at it.
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You nailed it
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Singh,
This is so valid. I do believe people with alopecia have a strong non-profit that directs money in the right way, not just toward treatments, but to greater genetic understanding. Researchers have only scratched the surface of understanding alopecia and related conditions. Keep your non-profit NAAF strong and get involved.
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Yeh Beth and compared to a few years ago there was no hope now they have discovered the pathways that attack the hair follicle we have abit of hope and I feel in the next coming years they will find out what courses alopecia and to hopefully they will prevent and cure it. Put it this way whoever comes out with the cure is a trillionare ! So I can see why scientists want to find the cure.
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There is a reason why it is still not approved in the EU... My docter said that it won't be here before 2018 (if it'll ever be approved).
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Dolly! I think because new drugs and for trial now , but I think most people get respond, and you have to be patient , and you can get Xeljanz from Turky it's very cheap .
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No dolly I think is going to get approved this year in the uk and EU as its already been pre-approved and filled for pre registration so even mybe next year.
However it will not be approved for alopecia but only RA.
http://www.ukmi.nhs.uk/applications/ndo/record_view_open.asp?newDru...
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http://www.ukmi.nhs.uk/applications/ndo/record_view_open.asp?newDru...
No dolly it will likely be approved later this year or next as its already been pre-approved and pre- filled on March 16.
However it will be for RA and not alopecia.
It's is also going generic in 2020 so worst case if you have to self fund I think turkey could be a idea however am not sure on the auntencity.
I know there is a drug in phase 1 atm called ctp-543 and the moment. And that is for Alopcia treatment. Also Baricitinib might get approved this year or next in the us.
So some options but am
Hoping they just drop the price atm for tofacitinib or get it some how approved in the UK and EU for us folks .
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Concerning the side-effects, I think it was last year that pfizer conducted a research and found that there is no relation between xeljanz and cancer, and cancer rates among xeljanz users and other rhumatoid arthritis patients who don't use xeljanz are the same. You can find the article online, so please don't publish this side effect nonesense again, we all know it.
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