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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 Return_life on
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gotta stay on it ifnu want to keep it. after 60 days progress is obvious...
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Permalink Reply by ChrisPowers on
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Hi Stacy,
I also have had AU for a long time (17 years or so), and also did something similar to you. I was on 5mg twice per day for about a year, then 10mg twice per day for another 3 months or so. Growth had pretty much stalled on 10mg/day, and while I did see a bump in growth after switching to 20mg/day, I still never saw any real action on my scalp. A bunch of invisible hairs and a bunch of random dark hairs that were just a hassle to shave (maybe 100 hairs total).
All told, I went from some patchy facial hair (maybe 5 to 10%) to about 50 to 60%. Specifically, my mustache came in to maybe 95% and my chin hair maybe 70%. That said, my cheeks were maybe 15%. My eyebrows came in to maybe 15-20%. My eyelashes were starting to grow in to about 100% except that the hair was very thin and light and barely visible from a distance. My "real" eyelashes were thicker hair and darker, so it was almost like it did nothing from a cosmetic perspective. You could not see them without being a foot away.
I did get a bunch more pubic hair, but that's about it. I had already had some minor underarm hair before starting Xeljanz, and that didn't really change. I also got a bunch more nose hairs. As you can see, I got my best results in the places that are a hassle, and my worst results where I was most hoping for growth.
I decided to stop the Xeljanz, because I felt the results I was getting were not justifying the risk of lymphoma and what not. I also suspected it was causing weight gain, but I can't be sure. That said, if I'd stayed on Xeljanz, maybe I'd have had full facial hair in a year or two. Didn't seem worth it to me. Full eyebrows and/or eyelashes? Yes. Beard and mustache I have to shave with no eyebrows or eyelashes? No thanks.
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Hi everyone,
I've been taking Xeljanz two pills per day for a total of 10mg a day. My doctor is now considering upping my dose in the next month or so, as I've had regrowth in the past 4 months after being AU for 3 years, but still very patchy. I am on the Xelsource patient assistance program, and I was wondering if anyone has gotten them to cover the extra pill(s) in the past. I am a little concerned because it is working, but I cannot afford the pills myself.
Thanks for any help
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Permalink Reply by Xeljanzmiracle on
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Hi Knightsfan, yes Pfizer will give u 3 pills a day on the Hardship Program if your doctor increases your dosage.
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Hi Xeljanzmiracle,
Thanks for getting back to me, I'm glad to hear it. I appreciate all your knowledge regarding the Hardship program, it really helped me through the process.
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Hello Xeljanzmiracle,
So Xelsource approved you for the program knowing you have Alopecia? They really reacted like I was doing something illegal when I said I have Alopecia, the Xelsource rep turned me over to some guy who started quizzing me about the label on my bottle, my name, age medications I take etc. etc. He started making me feel like he was going to report the pharmacy and my Doctor when I said I wouldn't answer anymore questions. He told me that the drug is not approved for Alopecia, like I didn't know.
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STOP GIVING YOUR MONEY TO BIG PHARMA. XELJANZ IS NOT A PERMANENT FIX. PAYING LOADS OF CASH TO THE PHARMACEUTICAL INDUSTRY IS ONLY LINING RICH PEOPLE'S POCKETS AND KEEPING YOU SICK. I'm sorry...but please wake up and realize how long ago this thread started. Biotin, eating right and exercising regularly is the only thing that has contributed to me growing back a good deal of my hair, (but I still have a big patch in the middle), Those things are cheap. Until stem cell therapy is allowed for this disease you are all fooling yourselves. I have had alopecia since I was 16 (will be 40 in September) but only where I had to wear wigs or weaves after my breast reduction in 2011 when I was anesthetized. My body could not handle the anesthesia. PLEASE stop shelling out for an experiment, even my doctors and MD Anderson told me that they have known for years that stem cell replacement is the only true possibility for actual reversal, but big pharma won't approve it because THEY WANT YOUR MONEY.
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omg I should have listen to you Kat 11 years ago! you have the answer to Alopecia.
amazing... guys it's all about eating right and exercising!
on a more serious note on stem cell, for your information the therapy is already allowed in different countries. there are numerous clinics popping all around the world that gives stem cell therapy. at this point reality is that's it is still unproven method, methodology of the therapy is different from a Dr to another, lots of scammers in the industry could give SEVERE adverse effects...
living with AU is difficult. if one finds a solution that works for them they will stick to it most likely. don't care if it's stem cell or a biologic as long as it works.
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Permalink Reply by Lindzzej on
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Im with you return life...I've had this disease for 20 years and congratulations on her opinion but that's all it is...an opinion. I take all I can as far as hair growth vitamins, I get my share of exercise in and my diets ok but that's not gonna do it for me. So thank god for xeljanz.
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Too right. If stem cell therapy was really a cure then there would be PROVEN documented positive results. All that exists is conjecture and myths along with a topping of low resolution photos supposedly showing patients stages of regrowth. Why would the stem cell therapy "doctors" be any less ambitious to make profits like pharma companies. !
Lindzzej , the diet stuff is of no effect. I've gone from being 15 stone to 11 stone in 6 months. Work out 5 days a week. Very diet specific on healthy foods. Results on hair regrowth in the past 6 months = zero hair regrowth. I would love to try xeljanz.
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lol I eat healthier now than when I had all my hair and take all kinds of vitamins zero difference in my regrowth.
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Permalink Reply by Rascalx2 on
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I have been living healthy lifestyle w: great diet for over 30 years, alopecia hit my system like a tornado.., then I up'd to a strict diet for a year gluten free, dairy free, corn free, nut free.. after a year of zero results i went back to whatever. The hair I have now which is very little is from xeljanz when I invreased to 20 mg s a day. If you grow hair back from diet you probably dont have alopecia, its probably thyroid issues.
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