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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 kevin on
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hi nicole in Istanbul it would be more of a problem due to the fall of the Turkish currency. and I had another order beacon expensive for 2 boxes I did not have any problem of out of stock. tomorrow I call my supplier in Istanbul because I do not think that this is true
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All currencies are devaluating, I tried to persuade the turkish pharmacy to accept Bitcoin as payment method.. a lot safer store of their value :)
But Europe is still catching up with the technology
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Hello Kevin,
No, I didn't say that they don't have Xeljanz for a year. The pharmacists said that they couldn't tell me when it would be on stock again. I should call them in a week again.
Most probable there will be a rise in price soon (2280 Turkish lira the moment).
I was only in Istanbul, can't say what the situation is in other Turkish cities.
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hello i called my supplier in istanbul he told me he could provide it he had no problem of stock, just call before. the price in itself is 2200 pounds
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Hey guys - I have been following this thread for a while. I was diagnosed with AU last fall (lost all my hair in about a month). I cycled through a bunch of different meds and finally started on Xeljanz four weeks ago (10mg a day). I am getting pretty nervous because I haven’t seen any results yet. I know everyone says a month is still pretty early, but based on all the responses to this thread it seems like most of the responders see results pretty quickly. Does anyone have an example of seeing results after a month without increasing dosage?
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Hi NY guy- I think the hardest thing with this med is the wait. It was 4/5 months and a pulse of steriods before I got started- now completely 100% back, and it’s a tad thicker then pre alopecia - I think cause I am not heat styling, getting it coloured etc. It’s been just over a year since I started with full cover occurring at about month 6. I think heaps of people stop because they lose hope- but I really encourage everyone to up dose (if you can) if you haven’t seen progress by 3 months- and stay on the med for a good 6-7 monthes before giving up. If you and your doctor are comfortable - perhaps some high dose minipulse steriods at about month 4/5 if your results haven’t shown up. Of course I predicate this by saying- regular blood testing is a must- most seem to tolerate this med well, but there are always exceptions to the rule, I am six monthes clear of my pulsed steriods and it’s going strong. Best of luck!
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Permalink Reply by Rascalx2 on
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Ny guy, i was on 11 mg a day for a year w no results until i went up to 20 mgs a day then i had results. Everyone is different but you will get it back just need the right dose , when i first started taking xeljanz i had a nasty cough and i dont think i could have tolerated 20 mgs a day from the start so , it was not a bad thing to slowly up the mgs for me. The pulsing w steroids definatly helps boost growth.. it will come back , i was in the same place of despair , then youll be complaining about how long or short you should keep or cut.... the experience with alopecia is probably ine if the hardest obstacles i have gone through, its like everyone can “see” what you are going through, you cant hide it like most other difficulties. Hang tight ! Have faith
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Permalink Reply by NicoleT on
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HI NYGuy!
No need to worry!Stay positive!
I looked completely baseline 4 weeks into my treatment.
I did not see results until about 3 months.
This is very typical.
My initial response time was a bit on the slow side according to my doc.
After about 5.5 months doc increased my dose to 15 mg per day.
Stay positive its way too soon to tell!!
Odds are good for you!
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HI Frida~
I've been meaning to ask and forgive me if you already told me..
Are you on 15 mg per day or 20?
And at how far into your treatment did you scale up to your most recent dosage?
Thanks!
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Hi Nicole,
i started on 10 a day, at 3 months I bumped that up to 20, at one point alternating 20 one day and 25 the next but my doc said only to do that for minimum time, so I was only there for a few weeks, pulsed steriods from the 4 month mark to circa 6 month mark when I had full regrowth, then stable on 20 mgs with nothing else for 6 months. It can take a bit, the hardest thing is kicking the remission off I think- then i think maintenance can be lower - or in my case I’ve dropped the pulse steriods. I’d like eventually to get back to 10mgs but I feel emotionally I need some time to plateau a bit before the anxiety of dropping the dose again!
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