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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 alopeciaguy1990 on
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i just have it on my beard and started xeljanz 15mg a day 3 weeks ago. so we will see. thanks for your input!
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Hi guys. Could someone please give me their thoughts on Allegra use with xelijanz?
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Permalink Reply by Vanessa on
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This is my growth after 5 months on Xeljanz generic 15mg/day. Anyone else start out like this and reach acceptable coverage and thickness? I have been bald for 11 years so maybe should expect that my follicles are a little weak and out of practice!
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Hey Vanessa! I've been on the same dosage of Xeljans as you for almost 5 and a half months. I have more coverage than you, but I only had AU for a year and a half before I started taking it so that might be a factor. Your progress is looking great! It may take a while, but I'm hopeful you'll have full coverage if you stick to it! There are some people who have taken Xeljans for the same amount of time as you without seeing any progress but eventually got full coverage. Stay positive! Looking forward to seeing the rest of your journey :)
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Hi Ahmed . Are you on 3 tablets a day or 11 in the morning and 5 at night ? Also I have been following your progress and you are inspiring me. Could you please upload your current progress photo for us ?
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Hey Meedo! I'm taking the Beacon generic 11mg in the morning and 5mg at night. I will be posting a progress photo update around October 15 since that will mark 6 months for me. I'm glad to hear my journey has inspired you!
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Hi Ahmed. I look forward to seeing your 6 months progress! Have you started in that does or did you start lower ? Also are you doing anything else to help your progress such as vitamins ? Are you gluten or dairy free or do you eat anything ?
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I started on 15 mg. I've been taking vitamin d supplements since I started and added biotin after month 3. Considering adding fish oil after month 6. I didn't change my diet at all.
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Hi Vanessa. I think given that you had AA for that long you are having a great response . I’m new to this but from what I read here looks like you are a responder. I’m on generic too and I heard that 5 mg would give you 4 so you are on about 12 mg a day. Maybe try and get the 11mg slow release and take that in the morning and take the 5 in the evening and that would give you around 15 mg . Also try derma roller a few times a week and add minoxidil solution twice a day and the derma roller would give you maximum absorption plus stimulating hair . Good luck
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Hi Vanessa- I had only vellus at 5 months but full regrowth about month 8. Its different for all. I think, in some cases, the length of time you’ve had alopecia can make it slower to recover. I had it only about 6/7 months before starting Tofacitinib. I recommend at least a year before assessing progress. It’s hard to be patient when we are all so desperate to recover but Tofacitinib is a long game.
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Hi everyone, i’ve been having a really tough time lately. I’m on the trial for a new jack inhibitor and have been for about 7 months now, i got almost full regrowth and now i’m having hair she’d like crazy! I don’t know what dose i’m on but whatever it is it got most of my hair to grow back so i don’t know why now all of the sudden it’s going again. My spot that never filled in has almost tripled in size. so much hair comes out it’s never ending. My scalp is starting to feel uncomfortable and i feel like my scalp is also dry and my hair is dry. I’m so devastated and just want this struggle to end. I went to the study doctor and told him of my worriesand he said maybe the drug stopped working for me. I haven’t heard of that happening before but can anyone tell me if they’ve heard of that? The other thing he said is it could be my birth control since i just started that a couple months ago. It’s caused a lot of issues in other ways and i’m getting off of it now. I thought maybe that’s what’s causing it and once my hormones balance it will go back to normal. However my hairs don’t have any bulbs at the end and i heard that’s associated with alopecia. I’ve thought about pulling out of the study and going on xeljanz so i can increase my dose, but what if xeljanz doesn’t work for me? or what if the transition period makes things worse? I really don’t know what to do or what to think, but every day it’s getting worse. I want to do the right thing. I’m feeling really hopeless and depressed and extremely stressed and not wanting to go on living. Please anyone if you have any advice or knowledge or opinions or support or just prayers they would be so appreciated. I feel so alone and i have no one to talk to. i’m so scared.
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