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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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if everything fits in the order your blood work try the steroid injections. dermoval gel or minoxidil to accelerate regrowth. many people on those forums we do this method and it worked
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Kevin, I get steriod injections in my scalp every 6-8 weeks and I use minoxidil every day. I also use Clobetasol 5 times per week. Fortunately, my blood was retested and came back in the normal range this time. My glucose was slightly elevated (pre diabetic) and my vitamin D was also elevated this time, but those don't have anything to do with Xeljanz. I feel relieved. Thanks for your responses and suggestions. It feels good to know I'm not alone although I wouldn't wish this on anyone.
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Hi Merry, I use xeljanz 10mg/15 mg every other day,for 6 months + 40mg prednisone a month 30 mg other month it’s started coming hair but I’m thinking slow responder too. But when you add steroid it helps, the problem is prednisone makes body swallon and I’m not sure how long I would stay with it, have you used anything other than xeljanz during in 3 years?
All the best!
shad
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Hi, Shad! I haven't tried Prednisone yet, but I might ask when I see my doc next month. I have used steriod injections, Clobetasol, and minoxidil all along. I also take Allegra every night. I feel like prednisone might help me because Cyclosporine grew all my hair back with color the 3 times I tried it, but it always effected my kidneys at the dose I needed to get hair and so I had to stop and lose the hair each time. (Heart breaking!) That was back before Xeljanz so I haven't tried that with xeljanz and wonder if I might be able to get more hair with a low dose of cyclosporine in conjuncitioin with Xeljanz without effecting my kidneys. I really need something to get my hairing growing longer and thicker so I can ditch this wig! Thanks for the advice!
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Permalink Reply by serg navaro on
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Unfortunately I’ve been stuck at about 40-50% regrowth for the last 6 months, haven’t really lost any hair or gained any, I’ve been on xeljanz for the last 2.5 years and see my doctor for follow ups and blood work every 6 months, I saw my doctor last week and she prescribed xeljanz for another 6 months and told me not to give up because there is regrowth but it’s slow, she also said to hold out longer because there is a new treatment being developed that’s a liquid topical form of current treatments mixed together that will be available in the near future, she’s the head of the alopecia registry here in Houston, this is great news because I do not want to take pills much longer.
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- Has anyone tried the Xeljanz in Turkey to see if the efficacy is the same?I’m getting from there and thinking works slower!
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I am getting from Turkey, taking for almost 4 months. Got very patchy regrowth. Doubled morning dosage few days ago to see if it helps.
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She is referring to ATI 501 and ATI 502 being in development by Aclaris. Indeed, as it seems this company is the only one being really and fully determined to finish development of these medications. Patients will then indeed have both a topical and a systemic (it is a liquid suspension) medication, attacking the disease from two angles.
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I am AU since year 2014. I started taking Xeljanz 10mg daily on Mar-2018. Here are some photos for Mar, June and now. I have more than 80% re-growth on scalp, eyebrow and eyelash fully recovered.
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