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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 TC on
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Hi All,
I came across this dermatology article on Tofa.
https://www.aad.org/dw/dw-insights-and-inquiries/2019-archive/april...
Found this interesting;
According to Ciechanowicz et al, tofacitinib is a reversible, competitive inhibitor of JAK that binds to adenosine triphosphate in the kinase domain, specific to JAK1 and JAK3 with a lesser degree of interaction with JAK2. Lower doses of tofacitinib, such as 5 mg BID, inhibit JAK1 and JAK3 signaling. Higher doses may inhibit hematopoietic cytokines and hormones [erythropoietin, thrombopoietin, prolactin, growth hormone, leptin, IL-3, IL-5, granulocyte-macrophage colony-stimulating factor (GM-CSF)] via JAK2 blockade. Tofacitinib inhibits the phosphorylation of STAT5 (in response to IL-15) and STAT1, STAT3 (in response to IL-6). Tofacitinib inhibits IFN-γ and the STAT1-dependent acute lipopolysaccharide-induced inflammatory response. Additionally, IFN-γ signaling inhibition by the blockade of JAK1 decreases the production of tumor necrosis factor and IL-6. Tofacitinib also may inhibit the differentiation of T-helper lymphocytes (type 1 and type 2) and inhibit type 17 T-helper cells. (2).
I didn't realize it acted on so many pathways and even hormones.
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People who have grown their hair back, what does normal shedding look like? I have recently gotten mine back and for the first few months i saw zero shedding whatsoever. Now i’m starting to see some hair fall and i don’t know what a normal amount is because its been so long since i’ve experienced shedding without loss. I remember the rapid shedding that comes with aggressive alopecia and this isn’t it, but the slower moving alopecia i’m not so sure. So what’s normal? and is it normal to go a few months with almost no noticeable shedding and then suddenly start to lose more hairs? I heard alopecians have a different hair cycle. Any response would be appreciated as i don’t want to stress myself out—given that’s not so good for hair loss. Thanks!
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Hi Cassidymain. I had a shed about 7/8 months after getting full regrowth. It was very minor and I only noticed it because I had been losing absolutely no hair at all (I checked each time I brushed) to have a few hairs come out each time I brushed. I had some stress around the time- my 19 year old dog passed and it really affected me emotionally, and some increased stress at work. I bumped my dose back up to 20 (I had gone down to alternating 20 and 15 every other day) and just tried to refocus on reducing my stress and it stopped. I notice some times a few strands here and there but nothing terrible and never anything even close to alopecia. I do think our hair cycles are a bit off kilter as we lost everything at once and than regrowth starts over a more truncates period of time, so I wonder if it’s your body trying to reset the cycle a bit. It’s hugely traumatic for us as alopecia sufferers but the bright side is it might help regulate the hair cycle so it’s not all cycling into a dormant stage at the same time. I was very nervous when I had a minor surgery and had to come off the meds for a week but I’m about 2 months plus out from surgery and haven’t noticed any repercussions yet. I think, if you stay on the meds the shed will remain minor and won’t go too far. Terribly stressful for you though - I know it brings back memories of the hopelessness during the initial hair loss...
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Hi Frida! it is definitely stressful, I’m also on a study where i can’t control my dosage and also don’t even know what my dosage is! I’ve been on it for over six months now and don’t have full regrowth yet, I have about 80-85% full mature growth but for some reason i still have a couple stubborn areas and two patches that are still bare, not sure why. I’m hoping it’s still just trying to regulate a bit and no new patches will show. It seems that most of my hair doesn’t shed much but the thinner hairs that haven’t grown in thick yet around my temples are shedding the most! That’s the spot that hasn’t grown in fully and still has patches aka the area that can’t affird to lose any more hairs! I wish i could get steroid shots but i’m not allowed while in the study. I’ll try not to stress as i know that makes it worse but i wish i knew what to do. Was your regrowth consistent once it started or were their periods with slower regrowth or seemingly none for awhile?
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Hi Cassidyman, sorry for late reply. Yes my growth had a few periods where I felt it wasn’t progressing at the same rate. I had, in particular , two spots that seemed to take ages to fill in and I ended up getting steriod shots to speed up the process. I think time would have seen them fill in by themselves but I was anxious to Chuck my wig so I went ahead and had the shots. Hold on- they will fill in - it just takes some parts a bit longer to kick into growth mode.
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hey! i’m a guy with alopecia just starting on xeljanz and have some questions. i just sent you a friend request
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Hi all. Anyone in the uk that’s got some tofacinix beacon 5mg they don’t need and want to sell them ?
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Hey all,
Update on me my spot is slowly filling in but I just noticed the smallest spot on my mustache now. Not sure if its AA or even a spot. I have grown my hair out over about a month because I am a bit scared to get it cut. My mustache spot has white hairs in it and small black hairs, I cut it short and noticed it. Probably either nothing or if it was AA it happened in July when I noticed my original spot and it was a slow progress. Pull tests are all negative both on scalp and beard.
I also think I have dermatits on my face, seems pretty inflamed. I have been taking accutane for about 2 months.
I have been prone to rosacea, acne and inflamed cheeks prior to xeljanz but wondering if xeljanz could cause me to get dermatits. anyone get this issue? Seems my immune systems to be out of wack since June/July and I am slowly getting back.
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Did anyone have rapid shedding once they started taking X. Been on it a week again and it seems like its having a bad reaction. Taking 11mg from Beacon.
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Joja101- this could be a sign of new growth. Xeljanz takes longer than a week to work so I’d be surprised if it’s connected. But part of the craziness of alopecia is that sometimes a big shed happens before you see growth. Basically the new hair coming into the follicle pushes the hair which is dormant out before you see the new fuzz come in. Unless you get bad blood results or feel ill I think stick with it. Most take about 3 months for results. Also - with alopecia often hair fall happens well after the hair is tagged - meaning the hair is sitting dormant in the hair follicle for weeks before you notice it fall out. This is why xeljanz struggles to control an active shed- thegair was already dead and waiting to go, but is very good, with time, in regrowing the hair.
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Hi everyone. Has anyone with Alopecia experienced night sweets especially the head area and night food cravings during the onset of Alopecia ? Please advice
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