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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 Xeljanzmiracle on
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You are responding Rascalx2, don't give up!
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Hi Mike43. I'm on the Hardship Program and was prescribed 3 a day and given it. I don't know if Pfizer will allocate more than 3 per day, but I'm guessing the pharmacy will fill the doctor's prescription. We are their guinea pigs, that's why they are willing to give us free Xeljanz. It's a GREAT program and even better now that they send out 3 month's worth at a time now. Wishing u long-term success!
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Permalink Reply by Starshine on
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Has anyone had any luck with getting Aetna health insurance to cover Xeljanz? My husband's group insurance is changing to Aetna and I don't know if I should consider switching. I am getting Xeljanz covered now through Blue Cross, but it was a battle and it is expensive to pay for on my own.
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Thanks, yes please keep me updated on your progress and I will also.
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Permalink Reply by Lindzzej on
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Hey everyone,
How many of you are experiencing some exhaustion w xeljanz...I feel pretty fatigued for the most part, just wondering how many of you are also experiencing this.
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Permalink Reply by Suzie on
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I have been on it for about 6 months and the fatigue is terrible. I am constantly tired! I try hard not to sit still cause if I do I will fall asleep so easily. I also have RA besides the Alopecia. I am happy that the Xeljanz is helping with both, but I cannot stand to be tired all of the time!
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Permalink Reply by Rascalx2 on
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I have read a lot of you say that, i have not experienced that, at least not that I ve noticed. My blood labs came back with decreased wbc count. Just starting to get more and more eyebrow hair although its no color. Gonna do blood work tommorow to see if it has improved or worsened. Gonna keep an eye on it, talked to MD. Still sticking with xeljanz til july to decide to stop taking it or not. Constantly question if reward is worth the risk w xeljnz.
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Lindzeej do you have RA as well? How long have you been on Xeljanz? Do you have AA or AU? I had AA for about 3 years and thankfully my patches have been filling in nicely and no more has come out.
I have been on Enbrel, Humira, Orencia and I've never been this tired. Actually I would feel more energized when my RA is under control, but not with this Xeljanz. RA is under control yet I'm very fatigued.
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I have AA I've had it for almost 20 years, been on xeljanz for just under 3 months and it's working well for me except the major fatigue and also some acne as side effects. Just a real drag being exhausted all the time but oh well. Everything normal w my labs so I'm thankful for that.
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Permalink Reply by ChrisPowers on
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You can add me to that list. I haven't been able to confirm definitively that the Xeljanz is to blame, but I definitely have fatigue and lethargy that began roughly around the time I started treatment. A couple days ago, I quit taking it altogether since it wasn't really working well enough even after a few months at 20mg, so hopefully I can remember to follow-up here to let everybody know if the Xeljanz was indeed responsible for the fatigue.
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