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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 AlopeciaDestroyedMyLife on
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No, I have had no issues in that regard. The only change I have had to make is keeping far away from anyone who is sick.
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Permalink Reply by lara on
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To all Europeans who come to this discussion and are interested in Xeljanz: Are you interested in starting a discussion on this?
I don't know about the attitude dermatologists in your country express towards this treatment but in Germany they all say that the cost is way too high for patients who 'only' suffer from AA. It seems to me that there really isn't a lobby in Europe who will try to push things and make Tofacitinib available for us any time soon.
Given that Pfizer was rejected when they tried to have it approved for arthritis, the company might be interested to try again and get an approval for AA.
Anyway, let me know, if we do not stand up for ourselves, I don't think anyone else is going to ...
And many thanks to all of those who are currently taking the drug and sharing their experience!
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Hi Lara, I'm from England, UK. Xeljanz isn't an option for me and I would very much like to try it. I'v had progressive universal pattern AA for about nine years. I now have no lashes/brows and over 50 percent reduction in scalp hair. I finally lost the lashes over the last few months and to be honest it's really reducing my quality of life. I'm wondering is there some way we can campaign or lobby.
Warmest regards
Mandy
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Hi Mandy,
I'm sorry for the late response but I was incredibly busy the last weeks. I am very happy to hear from you and can relate to your experience. Before this disease I never could have guessed what eyelashes mean to me ...
What seems important to me is to bring AA to the attention of a wider public and to inform that there are no effective treatment options at all available at the moment except for jak-inhibitors. I also think the dermatological associations of America as well as Europe could do something in the way of promoting research regarding topical jaks as well as making Xeljanz available while there are no better options on the market. I think it is a major problem that the impact of this disease is marginalized by medical professionals - if it weren't for Christiano's dedication which resulted from her personal experience of the disease there would still be no new insights whatsoever - the progress recently made is surely a result of the availability of new technologies, but also very much of her attitude to the disease as a socially and psychologically incredibly debilitating condition.
In order not to disturb this discussion which focuses on documenting the progress of those taking Xeljanz, I suggest we continue this via private messages for the time being :-) and talk about means to get this project started.
All the best to you,
Lara
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Hi - I am UK based although I work 6 months a year in the US - I am keen to to try and see if I can find a UK dermatologist interested to explore this whole phenomenon about JAK inhibitors and see what they would be willing to support - I could just do it in the US but its easier in the UK - if anybody has had any success with this initiative in the UK or Europe then lets try and share feedback/progress?
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No dermatologist in the UK will touch it. They are not allowed to because Xeljanz is not EU approved.
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Hi yes you are right - but worth seeing if they would consider other approved RA drugs that are approved
or I can do it in the US and they can inspect the results - even if they were just observing a US based treatment of a UK national might be worth exploring? Going to make a few calls and will update my results here if any
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Hi ,
I'm from the UK myself, I travel over to the US.
Yes they can watch over you . I have a Derm who I see every so often. She was fascinated by all this and offered me free blood tests. They can all provide support in the UK but can not directly get the medication or prescribe it themselves.
My GP didn't want to have anything to do with it. She regarded it as to risky due to the safety profile. My Dermatologist was the opposite.
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Hi - thats really interesting - I am based in Boston half the year, UK the rest - do you think we could switch to an email exchange so that I don't clog up this discussion forum? Really keen to share experiences as I intend to start with Xeljanz soon? Thanks Jonathan
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Sure just pm me .
It's all relevant on this thread and I'm comfortable sharing it on here as well.
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Hi Jonny
Did you ever get anywhere with UK Dermatologist. I have a good one in London
Denise
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