Alopecia World
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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 Brock on
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So I shaved my head! I haven’t used a razor yet... just a no guard trimmer so it’s definately short. Patches take up about half of my head!!! So I noticed when I run my palm across some of the spots they have tons of clear hairs that are rough to the touch. Is this growth? I’ve been on Xeljanz since December 4th.
Anyone try micro scalping to help hide the patches or any luck helping not show the spots when you finally shave it with a razor. I’m relieved I shaved but also it defiantly showcases the spots much more.
hope everyone is having a wonderful new year! Hope 2019 brings everyone a bunch of remission and regrowth!!
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That’s promising! That’s exactly what mine is doing and gaining pigment!(I am not on Xeljanz, but using a different approach) I looked into micropigmentation, it was too expensive for me to get. They wanted $4000 for full scalp tattoo.
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I’d say 30-45 days. Mine still had a slight bit of pigment that stayed and I noticed pigment starting to come back in that timeframe
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actually I did micropigmentation. 5 or 6 sessions in total. I started while I started Xeljanz and I didnt know what will work.
I think it's useful yet it's hard to find what exactly your pigment is because when after you do it changes how dark it is. My first two sessions the pigment was too light after all for instance.
The reason it changes so much is because is done on higher layers of the skin in comparison to tattoos (I have and I know from personal experience).
The other problem that exists is that the person that does it (at least the one I went), subconsciously tries to mimic your existing hair when they do it. That means that depending how long you have your hair (e.g. shaved the night before VS shaved 1+ day before), they mimic a different tone (because the tone is lighter when you are closer to the time you shaved). The way they mimic it is 1) by changing maybe the pigment or 2) by changing the pressure they use.
I wasn't satisfied with the tone for instance on my 3rd appointment and then I realized that the person doing it couldnt see the difference between shaving the night before or 2 nights before, thus I tried to get what I want by changing when I was shaving my head.
The only issue I can see is that I ended with some places in my head where it's darker than others the exact moment when I shave and it becomes uniform after half a day :-) I guess it's better for me.
Also, it's much more prone than tattoos to fade, so I think after the last years summer it faded a bit.
All in all, it helped me I could say psychologically.
As for Xeljanz, give it time. Light hair it's a start for growth for myself.
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Today marks 2 months since I started taking Xeljanz, and my results have been inconclusive. I was diagnosed with AA in July 2018, received some cortisone injections on my scalp, and looked to be on track for full re-growth. However, in late October/early November the alopecia came back much, much worse and I was diagnosed with AU. At this point, I had lost all of my facial hair and the hair on my head, and the rest of my body hair, eyebrows, and eyelashes were starting to thin noticeably. I was fortunate to get put on Xeljanz really quickly after my AU diagnosis, and in the 2 months since starting, I have noticed a little hair growth on my head and face (dark stubble and some vellus hairs), but all the other areas have gotten much worse. Is it normal to continue to lose hair in some areas after starting Xeljanz, while also getting growth in other areas? I have been taking 10mg/day, should I consider upping the dose to 15mg or 20mg, or perhaps try steroid pulsing as others have suggested? I would appreciate any insights or advice.
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Change your diet and supplement properly. https://www.alopeciaworld.com/forum/topics/aa-for-3-4-years-partial... it works and I will prove it fully as i continue. Ask yourself when have you seen results similar to this in the same timeframe with drugs? Also, relapse is extremely high when you stop taking the drug as well.
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Permalink Reply by Rascalx2 on
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I think its normal, as normal can be w this disease, keep on xeljanz , it will get better and improve be patient. The inflamation is still going while the xeljanz is kicking in
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for myself, 10mg/day did nothing for 3 months. 20mg/day started showing results within a month. Talk to your doctor about it.
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mscoops... we are in the exact same boat. I was diagnosed with aa in July. I got the steroids shots in my one spot and was hopeful. In September it went crazy.... I lost about 40 percent of my hair by December. Multiple large spots... one on the top of my head the size of my fist.
I started Xeljanz on December 4th and since then it still got worse and last week I shaved my head. I do still have my eyebrows and eyelashes. I’m hopeful that my hair will grow back but it’s definitely tough to be patient. I am taking 15mg a day.
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