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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 Rascalx2 on
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If i go down to 15mg of xeljanz it starts thinning out quickly, anyone decresase dose lose some hair but then stabilize? I have stuck w 20 mgs for pretty much whole time ive been taking it, it does say that for ulcefative colitis, 20 mgs is the dose regimen they use to treat that disease...anybody have input? Scary, feel like im a walking timebomb
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Permalink Reply by Frida Rupert on
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I agree with mastros, these studies are often done on compromised subjects. Many of the risk factors for xeljanz were developed from studies on people with RA, unresponsive to methotrexate (meaning reasonably serious RA) which puts them in a population that already has significantly health issues and higher morbidity. The study is concerning but personally 20mg is a dose I am comfortable with. I’m going to use the results to motivate me to do lifestyle changes to mitigate the risk in other areas. When I read the article it made me think perhaps taking a small daily aspirin dose may assist in prevention - given it thins the blood. One to run by my doctor next time I have an appointment.
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"This study was designed to assess the risk of cardiovascular (CV) events and therefore in contrast to previous tofacitinib studies, patients were required to be at least 50 years of age and have at least one CV risk factor to be eligible for participation in this study."
The main CV risk factors: https://www.world-heart-federation.org/resources/risk-factors/
Also, the study is on going https://clinicaltrials.gov/ct2/show/NCT02092467
The statistics behind it do matter a lot.
Let's judge after the methods and the results of the study are published.
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Is taking 10MG total a day (5mg twice a day) more safe?
Not even sure if taking more helps, doctor says she hasn't seen any quicker growth with 10mg or 20mg from their study
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This is not surprising. A pulmonary embolism is essentially a blood clot in one of the arteries that go from the heart to the lungs. One of the side effect risks of Xeljanz is a potential for blood clots even with a 10mg dose.
One of the reasons my biochemist friend suggested that I supplement with Resveratrol in addition to being a CYP3A4 inhibitor is that it also acts as natural blood thinner.
Frida, be careful not to take aspirin (or any blood thinner) if you're already taking Resveratrol.
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I am taking 600mg of trans-reservatol (on mobile) is that enough and ok?
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Actually scratch that.
The ones I take are 600mg Resveratrol (50% trans 300mg).
It's important to stop taking them at least a week before any surgery or procedure that could cause bleeding.
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Hey Brock,
I'm right there with you buddy. We started Xeljanz just a few days apart.
Started Dec 1st so It's been a few days over 3 months for me. First 2 months at 10mg/day. My doc had me increase to 15mg/day on Feb 1st. Since I started Xeljanz I lost pretty much most of what was left.
It's so strange because the first month I felt a whole bunch of tiny spikey hairs on my scalp and by the end of the 2nd month they were all gone.
I've been feeling so low the past few weeks. It's been really hard to keep my spirits up, but I've never been quitter so I just keep training harder and that helps calm my mind at least. But I totally share how you're feeling bud. Where's the group hug button? I could really use one about now! :(
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I did but I was losing it right before taking it too. I had AA that was progressing to AU I believe.
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