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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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At first it can be patchy but try and hold out. Steriod Injections in the spots will help and some places take a bit longer to grow out. Wear a hat that doesn’t rub too much. My guess, if you are getting good growth now the patches will fill in about 3-4 months. A bald cap might damage those vellus hairs before they get stronger. There is no medical backing for that opinion of mine but just something I noticed were that the vellus hairs were fragile at first.
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I worried about the vellus hairs, too, because I wear a helmet when I ride, almost daily and for hours sometimes in the summer heat. I wore a wig with a nylon cap under it and I bought a helmet that was a little larger so it wouldn't be too tight. It was okay, my hair grew in fairly evenly and I don't think wearing the helmet hurt.
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Yeah it took about 4 months for me for full coverage and then 6 months to start thicken up .I did have one small baby patch the size of a dime. Give it time.
By the end of May I had hair all over but clearly I had thicker hair in certain areas. By the end of August I was pretty much able to start growing my hair .
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I was on I think 100 MG a day for 3 days on Prednisone for 3 months and 10 MG of Xeljanz. No regrowth at all
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Thank you TC .
My scalp is no longer burning and my spots have slowed down considerably. They have grown in the past 2 weeks but I did start takota my new dose of xeljanz about 2-3 weeks ago .
My shedding is going down considerably, but I'm slowly freaking out because I don't see growth in my spots yet. I saw at least white hairs the first 3-6 weeks when I was AU .
Hate the unknown
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Hi everyone, I need some advice please !
I have been on xeljanz for 3 months ( 14 weeks ) and I have about 90% eyebrows, 70% eyelashes and about 50% moustache and goatee area. And some chest and body hair.
my beard has small vellus hairs in light and my scalp has small vellus hairs when seen in light. But my scalp hasn’t really took off although it’s early, is there any recommendations that I can take with xeljanz? Is this normal ?
Maybe I should add steroid pulsing at some point ? Is xeljanz working fully?
Please guys any tips tips and encourage would be great please.
Thank you !
Singh.
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Newjack, don't freak out buddy. I feel you. Hair doesn't grow that fast. They just fell out. It takes 2-3 months to recycle. You've already been down this road and you know X works extremely well on you!
You'll be back to being a wolfman again very soon! :) Hang in there.
I'm trying really hard not to freak out because hair is shedding like mad everywhere and I have no idea whether I respond to X or not. That's a scary unknown. Just bumped my dose up to 15mg on the 1st.
I really hate what this illness does to our heads and emotions.
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Hey Singh,
I'm not be the best person to give advice since I haven't seen any regrowth yet (cue Frida - our resident hair fairy) but you should be elated that you're responding!! Congrats buddy! I know how patiently and how long you've waited for this to happen and it finally is!
In my humble opinion, adding steroid pulsing or other potential treatments in tandem to X is a personal choice on how much/far you want to push your body just yet. Adding 5k or 10k mcg biotin & 5% minox foam would help speed things up without any risk. And then see where you're at at 6 months and re-eval next step?
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Hey,
My doc prescribed 60mg/day of prednisone. Started 2 weeks ago.
I am on 15mg of Xeljanz for 1 month - no result so far.
I was taking Prednisone before and had 90% regrowths by the end of 2 months. But everything fell out when I stopped. Now I am hopping that Prednisone will induce regrowth and Xeljanz will keep it going.
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