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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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Carlie- the blonde pixie style! Love it. Feeling like you’re channeling a very cool Mia Farrow vibe!
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Yes, right out of Rosemary's Baby! It's more grey than blonde and I need a little more length on top before I will go without a wig but I'm getting there and feeling more like myself. I am wondering about the curls, my hair was always straight before.
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Oh Kevin- that’s fabulous! It’s taken it’s time but your results look great. Very happy for you!
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Hi Frida, I'm so sorry to hear you are going through these feelings again. It is forever in the back of our minds that when we see a hair in our brushes it's happening again. I think it's perfectly normal to have periodic shedding. You, like myself, were hit hard all at once. From the first signs of hair loss to complete baldness was only a matter of a few weeks for me. Thankfully, you have a doctor that listens to you and getting that pulsing is key to stopping this from blowing up. Prayers for you.
xx
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Hi Frida,
Sorry you're going through this. We also had to put down our pup of 14 years a few weeks ago and it's been devastating. There are no words anyone can say. Only time can heal the loss. It's going to be ok.
Consider staying away from any Benzos like valium. It's going to make things much worse.
Instead find something that helps your anxiety. Workout, meditate or whatever calms your mind.
Hang in there. You've been here for all of us. And we're all here for you :)
TC
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Thanks TC, Kevin, Carlie and everyone. It’s rough having it happen but so far it’s not happening in extreme amounts, patches or quickly. I am more calm then I thought I would be because I do place a lot of trust in the meds and feel they will prevent this getting too bad. It maybe dose related so back up again for me, but I do know it’s the combo of major work stress over two or so months (work restructure, new management, tension) and my old dog passing which caused me quite intense grief (knew it was coming but still didn’t seem to help when it did). So I’m trying to chill, let go of the tension at work and repeat the mantra- “this too will pass”..... as always this forum has been my saving grace! I love my alopecia forum peps!
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Hi All,
Recently had lunch with old friend who's a brilliant bio-chemist. We talked about AA/AU and Tofacitininib/Xeljanz. I mentioned I was considering increasing my dose because things were getting worse and he expressed some concerns. He got back to me a few days later and suggested I read up on supplementing with Resveratrol.
Xeljanz has a pretty short half life of around 3hrs and is essentially out of the system in 8.
It's essentially broken down in the liver by an enzyme (CYP3A4). Resveratrol inhibits this process and should slow down the elimination of Xeljanz. I'm still researching, but this may eventually help some that haven't seen a favourable result from a 10-15mg dose, and hopefully will help others that did achieve results be able to wean down to a lower dose.
Thoughts?
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Makes sense. I wonder if taking 5mg every 6 hours would be more effective then for people who aren’t responding. I know it would be a pain but if it works.... it works.
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Hey Brock!
How are you feeling these days? Any progress on your side?
I'm coming up on 2 months Feb 1st. Looks like a few new hairs popped up, but other than that still shedding. Got fed up of winter in the north so took some time to head down south to enjoy some sunshine. I came down with a bad cold as soon as I got here..doh! It's been lingering longer than it would without Xeljanz I think, but nothing I can't handle for now. Hopefully can get in some beach time soon!
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Relaxing is probably the best thing you can do with this condition. I have regrown some hair on the top of my head. It came back completely white and is slowly regaining pigment. I completely razor my head so it can be hard to tell if I’m growing or losing more... which is ok with me. It helps me not really think about it much.
i went back to work this week after shaving my head so I’ve gotten a lot of questions. I just tell them I lost a bet on football lol.
Im trying to just take the meds and be hopeful. Unfortunately everything that happens is pretty much out of my control so I decided to not let it control me.
Enjoy the beach!!!!!!
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Good for you! That's the spirit bud! Lost a bet on football lol
If you can't laugh, you got nothing! Glad to hear you're seeing some new hairs come in. Hopefully by sometime this summer we can exchange hair style ideas :)
If I remember right, you're on 15mg/day? I'm still on 10mg and wonder if I should bump it up 15 or keep waiting it out or I'm just being impatient.
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