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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 Frida Rupert on
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Hi Carlie, I tend to use over the counter these days though I did get specially made up minoxidil online that was 10% for awhile. The main reason I stopped was I just kept forgetting to reorder before running out and then I thought well may as well use the bottles I have bought to use while waiting for the other stuff to arrive and then just kept on using it. I prefer one called minoxidilmax which is a high strength one that included a small dose of retin A as since recovering I tend to get scalp acne and that one seemed to treat that’s as well but the 5% over the counter generic seems to work just as well in terms of hair growth and reducing hair fall in my experience. I also use the 5% version rather then the 2% version. Hope that helps xx
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Yes, it does help. I will give it a try. I feel like my hair is very fine and thinner, but seems to be thickening with cuts. I still wear my wigs if I'm in a hurry and don't feel like fixing my hair. I'm avoiding coloring and I'm trying to give it a chance to get stronger. I think I overdid it and stressed it a bit, cut, color and curling. I'm even trimming it myself for now trying to encourage growth. I'm thankful for the full recovery but still trying to improve it, which I feel I can.
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I'm going down a rabbit hole whether or not I need to get another injection. My doctor thought everything looked good but I looked at pictures from a month ago and it seems my spot grew (was growing in,)
First picture is from first week of November second is from today. What do you guys think? To me looks like it got slightly bigger.... Grrrrrr...
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Hi New Jack - it looks the same to me as well-are you noticing hair coming out or is it just you feel the patch is looking bigger? Are you getting the tingling of the scalp or any of the other signs of an active flare? It looks like perhaps you have some scalp acne (I have this now on Tofacitinib too - one of the only side effects I’ve noticed) and wonder if you maybe touching the area a lot (I do with mine and have to be disciplined not to “pick” at it (sorry for grossness) - I think constant touching or fiddling with a patch make it worse too, as it introduces more bacteria to the spot which in turn kicks off a defence by our immune system. Not saying it’s not alopecia, but it’s very minor, it doesn’t appear to me to have gotten bigger and without the added signs of a flare (hair shedding and tingling) then try and think positive!
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Hi Frida and everyone else.
I have burning, but no tingling. I have a negative pull test but the burning is not in that spot only it's all over. Could be anything I suppose.
Thanks for everyone listening to my anxious ranting these past months.
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I also noticed that I have another pencil sized spot but it actually has hair in it. Makes me think that my hair isn't falling out but stalling and regrowing...I had a similar issue in August with a bigger spot but it really wasn't bald it was light out of no where very sparse and now it's full.
Very weird. It's like it's trying to erupt and xeljanz is trying to put a cap on it. I want to put it to bed again.
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I suggest you stop looking, I know it's hard but unless you find hair falling out you're just causing yourself extra stress. I know it's hard, but I never look for bald spots, I get that burning sensation at times when my head feels really hot but the tingling sensation that you get right before your hair falls out I haven't had, I hope I never feel that.
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Permalink Reply by Rascalx2 on
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Newjack,
dude you are just letting paranoia get to you, get on on with your life, we’ve all been there , worry when hair IS falling out. Be grateful you have the growth you have
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I saw a quote today that was great for us, “dont overthink, it will kill your happiness”
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