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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 JustAnotherBaldGuy on
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ADML: Any updates on the Turkey-sample submitted to Pfizer?
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Has anyone heard of "buy and bill?" My insurance is contracted with CVS Caremark and Tufts by no surprise denied filling Xeljanz but suggested I try "buy and bill." My doctor would buy the drug wholesale and then bill insurance. The person at CVS said it's generally successful. Seems too easy to me???
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Anyone following @thealopeciaexperiment on Instagram. I'm so sad seeing her update.
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Permalink Reply by Xeljanzmiracle on
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I was, what happened? I think she went down to one Xeljanz a day. Did she start losing hair?
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I was but don't for get she is experimenting and she had been AU for 4 years. She is goin back up to 2 pills a day!
Don't forget this is a treatment not a cure do all stay positive !
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Does anyone know what happened to Kyle Rhodes? Is he still taking xeljanz and has he had any relapse. I can't find any information online...
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Hope it's works out for her I was following her a long time. she gave me hope.
I know everyone is different but it's a shock for me to she the patch. It reminded me how mine started.
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I believe Kyle Rhodes also started shedding his hair after the meds stopped (someone mentioned it in a previous post...no online info on it). This is just a treatment and not likely a cure for us. It may help to put minor AA into remission but AU is a different situation. The problem is the protein in the dermal sheath of the hair that the body wants to attack. This medication just blocks the signal to the T cells to keep them from showing up and causing the inflammation. The protein and thus problem is still there. We need to either "turn off" the protein or re-educate our immune system to re-establish the hair follicle's immune privilege around the problematic protein. I still think stem cell treatments will be the closest thing to a cure for this condition.
I am not shocked...but disappointed that 1 pill a day did not maintain it. Maybe 2 pills one day 1 pill the next? I think this will all be case by case.
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Well put mate yeh hopefully in the next coming years stem cell treatment will be the cure for us all. Still she was on one pill a day for 4 months and now started shedding so it could be just up the dose when needed then back to one..and how is your hair growth going have you maintained it?? And what dosage you on Cvs?
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