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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 Nat on
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Hi NYCGal,
My first order was in the JFK customs for 3 weeks, then released. Also, I live near Atlantic City and can give you some Tofacinix until you get your order.
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Good news, just got notification that customs released it!
Nat - thanks so much for your offer, that’s so sweet but hopefully I get it soon. Will def ping you if I see any issues.
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Can I ask how many pills did you purchase? Just wanted to know what seemed to be better for customs issues
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I got 20 boxes (30 table each at 5mg) for 400. I think 15/box + 65 for courier + wire transfer fee ($35) so all in 400. Minimum order is 20 boxes
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Hey. Could you clarify what you mean by minimum order is 20 boxes? I placed an order for 29 boxes and they sent me an invoice for it which I already paid for. It hasn't been shipped yet though.
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I initially tried ordering 12 boxes but they responded back at the minimum is 20 boxes. I didn’t have a problem with the payment or invoicing once I order 20 they sent me an invoice which I paid for. It took a while for them to ship, maybe a week or so, but then it was sent and after two weeks or so I got it from customs. Make sure you send him the wire transfer confirmation as their proof of payment.
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I have found that 20 boxes is a good number. It’s a large enough order so it is worth their time, but the one time I ordered 30 boxes it sat in customs for 40 days.
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LJBMD, was this in US customs? Wondering if this will happen to my 29 box order.
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Permalink Reply by serg navaro on
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Doesn’t seem like xeljanz will ever be for Alopecia, and once you stop taking xeljanz everything you grew back will fall out, unfortunately that’s what happened to me. I would suggest looking into clinical trials in your area, there’s a few out there that are trying out medications specifically targeted for Alopecia, they also monitor your blood work to make sure everting is ok. Treating yourself with xeljanz or off brand xeljanz seems risky to me. Trust me I was desperate to try anything and I’m still not open with friends or family about my Alopecia.
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IMO there is a root cause and Xeljanz is a bandaid. Once you stop taking it and you haven’t rectified the main issue and everything returns to what it once was. I am not trying to start an argument. I am just saying from a majority of the cases I have seen where people cease the drug and like you said the hair goes back to falling out.
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Hi Cocopuffz, to a degree I agree. Some people have come off and retained hair, many, at this stage, cannot. My personal opinion is that xeljanz is a treatment, not a cure. Just like numerous other conditions that require ongoing treatment, blood pressure, diabetes, cholesterol - some people need to remain on medication to be healthy. The current situation is that there is no cure. I think there are promising signs regarding new treatments or processes that might enable a process that will “cure” the condition, likely to be stem cell or genetic therapy, but that’s awhile off, and will be too expensive for the near future for most of us unless we can get on trials. From the experience of other popular alopecia treatments- methotrexate, cyclosporine and other biological meds- some can come off once remission is induced but it’s a bit of a gamble and must be done very slowly to prevent a flare from hitting and wiping all the progress. I suspect the ability to come off relates in part to the bodies innate ability for natural remission. Personally I don’t, nor have ever, had an issue with ongoing use of medication to treat an uncurable condition, it just makes sense to me to ensure my quality of life. I have a friend from mother’s group who actually has a type of blood cancer, which is incurable but not terminal - meaning she has to be on meds for the rest of her life, but if she is on meds she can live a normal life span. While alopecia is not terminal, it is debilitating. If I need to stay on a reasonably safe treatment long term to mitigate the condition then that’s what I personally will do. I understand for many this is not something they are comfortable with, and that is equally fine, and as alopecia is not terminal it is a legitimate choice.
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