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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 Natalie on
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Hi All
Does anyone know of a caring and supportive Dermatologist in the UK. I am hoping to start taking Xeljanx and looking for someone to monitor my blood work etc.
Thanks in advance.
Nat
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Hi Nat,
If you have a compassionate GP, the blood tests are pretty much standard for immunosuppressant use, and many GP’s monitor the bloods of patients on methotrexate and cyclosporine- so they would be able to do the same tests on you (I think- Aussie system a bit different to UK). They need to look at liver and kidney test markers and also the basics like iron levels, white/ red blood cell count, vit d and thyroid. Also doesn’t have to be a dermatologist - an immunologist or specialist that deals with immune issues, and practice with immunosuppressant use may be more open to the idea. My local gp does my monthly bloods, and I see by immunologist every 4 months to track progress.
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Hi Nat.
I also live live in the U.K. and have been following this thread. The dermatologist I previously attended refused to support my taking g xeljanz. I would be interested to hear I’d you find a dermatologist as given it’s not licensed in the U.K. I think it’s unlijely that a dermatologist will support it.
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Hey mastros - have you checked out the Belgravia Centre, based in London? Highly professional, highly recommend.
You can get minoxidil from them in 5% or 5% liquids solutions, and I think you can also get 10% and 12% cream solutions.
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Hi guys,
just been looking at “natural” Jak inhibitors” - in particular, ones that focus on the Jak 3 pathway. I know Ruxo has a similar, if not slightly higher success rate than Tofacitinib. However, as it stands Ruxo is kindof I’d reach financially for most of us... has anyone tried to use berberine in conjunction with Tofacitinib? I don’t think on its own, without the strength of Tofacitinib, it would do much, but it would be interesting to see if it helped block the Jak pathways and enhanced growth. There’s a bit about it’s abiljty to help in many other areas - diabetes, weight management, etc and bits of pieces on blogs and forum re people who have suggested it for hair growth/loss, but not much follow up. Wondering if any of the people on here have given it a go as a co-therapy?
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Yes I tried berberine by itself and with xeljanz didn’t do anything for me
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Sorry to hear that... it seems to be rather high dosage for it to work in terms of diabetes - 3 x 500mgs a day (split up as gastro impacts can happen if taken all at once). It does seem to have some Jak inhibiting properties but alas probably not enough to be effective at blocking enough of the Jak 3 pathway for us alopecians...
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I took berberine for about a month. I can't really see a difference. I am going to get try again . Any brands from your research that is better than most?
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I just get most of my vitamins from piping rock or iherb, the supplement/vitamin industry is rife with under, over or totally different dosing so it a bit of a shot in the dark. I liked the high strength biotin I got from piping rock so just ordered my berberine from them- I get my vitamin d from iherb, and others I pick up at local chemists (they don’t carry high strength vitamin d, high strength biotin, or rarer things like berberine so that’s why I buy online, and so much cheaper). I’m gonna add berberine for the next 3 months and see if I notice anything. I am still shedding a bit, but it’s hard to tell if it’s me paranoid or actually shedding, no clumps or chunks of hair, no patches, not really thinning out either and I am noticing a second layer growing in under the existing hair so wonder if my hair is just out of whack in the whole cycle process, I just know that a month ago there were no hairs in the comb when I brushed and now there are a few. How are you feeling about everything at the moment NewJack? I know it’s such a scary time right now , with the shed and medical issues, but, as a responder, I really think it’s just your body having a temporary flare due to having some health issues. Your not gonna go AU again, and you’ve got so much hair naturally that it’s probably only noticeable to you that you are having a shed. I know that’s not the point though- reliving the trauma is hard..
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Hi Frida, first of all thanks for bringing to my knowledge of what Berberine is. I haven't tried it yet it does seem interesting indeed.
I did find this paper https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3171864/ which displays JAK inhibition by berberine - the results are observed on cells and on animals.
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