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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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That’s great Mashloum! It starts slow but once it really kicks I , at least inmy case, it came in thicker and faster! Is your son excited?
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Permalink Reply by Mashloum on
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He is, but he is not expressing that. From 60-90 days it is different progress
I agree with your point
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Permalink Reply by roxy on
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Had anyone from South Africa tried this drug. I would really love to start it and I would love to know of a reliable doctor who could help me through this journey ... oh how I dream of my hair growing back!!!
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Hi Roxy, not sure about South Africa but in many countries a regular gp can prescribe it - though if it’s not known widely amongst the medical community in South Africa you may want to collate the info to take in with you- once you get a script you could look into importing it/ buying it overseas. The doctor would just have to run regular (ie monthly or every two months) blood tests which would be similar to those run for methotrexate and prednisone use (liver/kidney markers). I think it’s more of matter of finding where you can buy the meds from and making your case to a doctor.
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I'm on my 4th month of xeljanz. I saw my regular dermatologist and asked for the betamethasone and was told I needed to talk to my specialist about it and because I am on xeljanz, he wouldn't give me my quarterly shot of kenalog. I have an appointment to see my specialist on 7/18, this coming week, but meanwhile most of my fuzz seems to have gone away. My lashes and brows are still here but I am using Lumigan, which I think is really helping. Clearly the steroids are necessary for the scalp regrowth, so hopefully, I can convince my specialist to prescribe them for pulsing. This is so frustrating, this disease is wearing me out. I hate being dependent on these drugs but I hate being bald, more. I must admit that my diet is healthier than ever before and all the supplements must be a huge plus because my blood work is better than ever, including cholesterol. I don't think the average doctor realizes how devastating this is. I hate to compare it to cancer, but a friend of mine who had cancer lost all of her hair and she said to me, "at least I knew my hair would grow back" and 6 months later her hair was shoulder length and thicker than ever. Her prognosis was good, although the treatment was hell but it wasn't forever like this feels. I'm just feeling a little sorry for myself today and needed to vent.
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I totally understand! My husband comments that for me, with my phobia of hairloss before this whole thing struck, due to a childhood friend who lost all her hair (AU) this was worse for me then a cancer diagnosis- because of how I manage stress- I tend to just look forward - with cancer I’d either recover or I’d die- I wouldn’t have to cope with the “forever” aspect of this condition. I hate saying that I’d prefer cancer and am not taking away from the trauma of that experience- just that for my unique psychological make up- I have faced death before - and it scared me less.
I’m frustrated for you Carlie. It really annoys me when doctors don’t listen to what the patient wants when the patient often knows more about the condition and treatment then the doctor... and we are the ones that have to live with the condition. I think you’d only need 3 months on them to get it filled in and then you could be off them. I hope that the specialist listens to you and either gives you a script or offers an alternative....
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