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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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Replies to This Discussion
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Permalink Reply by AlopeciaDestroyedMyLife on
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That's great news, you look amazing in your photo. I had a few minor patches on my beard but they have always swiftly grown back.
The least I have gone without xeljanz is 1 tablet every other day which maintained my hair well. I am currently on 3 a day along with minoxidil. My hair has gotten better since my last photos but it looks as though I may have male pattern baldness which is not what I was hoping for. I will post some photos shortly.
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Permalink Reply by Starshine on
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Thanks ADML. That is so unfair to have mpb and this stupid disease. Hopefully minox will help both. Glad to hear you have not had any major relapse, hard to believe its been over two years since we started Xeljanz. Is there anything new to share from Dr. King?
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and people relapse while they take it. i think Ruxo will not.
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u can have relapse with any biologics.
at some point your immune system becomes use to the drug and does fight it well so the medicine is not effective anymore. for some lucky people you can stay all your life on the drug without relapse. we can't predict!
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Permalink Reply by dreamscometrue on
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And that's the part I don't like, which is why I'm glad I have choices. Take the meds and maybe or maybe not suffer adverse effects but get hair results, or continue to be hopeful that something better is out there, lees adverse to side effects. You're right we can't predict but its up to each individual to know your body better than any doctor, after all its you that lives with you everyday and you know your body better than anyone. I work in concert with my doctors for me, not the other way around. An informed decision is a smart one, and its good to read up and educate yourself and not rely on the words of a doctor or pharmacy, and wonder why things don't work
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has anyone bought Ruxo in Turkey,telephone or e mail ?How much?is it the real not fake medicine?
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Permalink Reply by sadele on
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Ruxolitinib is more costly than Xeljanz.. it's approved for bone cancer, which is why insurance companies will not cover it for Alopecia. Out of pocket it is around $11,000 a month. I've been on this forum for 3 years and have not heard of anyone taking this medication. People talk about it but I have yet to know anyone take it. Trust me, if I could get it I would try it. And I'm sure a lot of others would as well if there were stories of success. The JAK's are working for a lot of people, however, it's incomplete for full remission for many. Hopefully something will come out that really works for the stubborn responders.
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baricitinib is also jak1.2 hope cheaper than ruxo.
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baricitinib will be on the market april 1st in german.
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send me a private message
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Hi Football Fan. How are you doing now? I agree with the others that you need to try another biologic. Hopefully Baricitinib will be available in the not so distant future. My hair never did get a lot of pigment back. It did turn a little more blondish, but a far cry from my original color of dark brown. It is hair, however, so I am not complaining. I am currently alternating between 3 and 2 pills a day. Stay positive, I really believe one of the other biologics will work for you too. I have attached a pic of my hair after two years on Xeljanz at 3 pills a day.
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