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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 Mashloum on
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During the period from July up to beginning of December 2019 we were using 1.5 tablets of 5 mg and progress started but then falling down the white hear progressed
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Permalink Reply by Frida Rupert on
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Oh Mashloum this must be so hard for you and your wife. I know that Beacon is now producing a baricitinib generic and I wonder if Anas may respond better to that as it is a stronger Jak 2 inhibitor. It’s less researched than Tofacitinib but the risks seem quite similar. I’m so sorry that poor Anas has to deal with this.
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Has anyone had surgery on Xeljanz? I just had surgery done and my surgeon wasn't all that concerned that I was on Xelijanz, he looked into it and said it, if it was prednisone than I would have to stop it but Xeljianz doesn't act the same and this surgery was a few incisions and a few sutures. I am not going to lie, I am worried. I had the surgery on Saturday 1/25
I am wondering if anyone had a surgery where a few cuts had to be made and still stayed on it.
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Permalink Reply by Apple on
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I’ve had numerous surgeries on xeljanz, no problems; my surgeons were all aware of my medication. Continue as prescribed. If you stop taking it for surgery all sx seem to be exaggerated due to body under stress to repair site. That was my own findings anyway.
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Sorry for delayed response New Jack - I’ve had surgery and recovered fine. I weaned down the week before, and then restarted once the incisions healed. My main concern is what i term as rebound inflammation - the body overreacting to what it believes is a threat (incision wound) - which could cause minor shed, though this didn’t seem to happen for me.
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Thanks Frida, I haven't been off my meds. My doctor saw me today and said everything looks good and no infection. It's been only 9 days and could take 2 months to fully heal but the incision should take about 2-4 weeks. My stitches are already coming out. A little earlier but my doctor didn't sell to concerned
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Hi Jack, healed for me was just crusted over (sorry to be gross), I went back into full dose after 3 days! Great to hear you are doing well, I’ve found I’m less sick and prone to infection on this med- go figure?!?
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Is anyone else here on the Pfizer Assistance Program?
I am on it for 10mg a day, but is anyone on prescribed 15-20mg and Pfizer is giving it to you all for free?
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How has 10mg working for you, i started straight on 15mg and had great result but now wonder if 10 would have worked.
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