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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 Merry on
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Cassidymain, I understand your despair. I lost 3 years' worth of growth when my insurance caused a lapse in my medicine. It is so distressing! I don't know why you are losing hair when you haven't stopped your medicine, but I do know that once you go into the shedding part of the hair cycle, it usually has to run it's course. The encouraging thing is that for me and others I've read about, regrowth is better, thicker, and faster the second time. I hope that your doctor helps you figure out the problem and remedy it. In the meantime, hang on! There are new medicines coming, and scientists are gaining a better understanding of alopecia. I know that isn't much consolation right now, but it is too soon to give up!!! I have been battling this for about 10 years now. It has affected my whole life, making me feel self conscious and less outgoing. You are not alone!! We have to have hope.
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Thanks for the support Merry. I’m trying not to stress but it seems like my body doesn’t respond to this medication anymore and i’m not sure why. I haven’t heard of that happening to anyone else. I’m having a relapse in allergy symptoms and eczema as well which immediately went away after starting this medication. I reached out because i thought the medication could’ve gotten too hot as it’s supposed to stay between 36-46 degrees and my refrigerator can be finicky but my study director said that in her opinion it’s unlikely . My dose should be the same and i just noticed this happening two weeks ago. I just want to know what’s causing it but i might not have an answer. The fear of it not working for me anymore makes me think switching to xeljanz maybe wouldn’t work either, but i don’t want to have that thought. This has worked so well for me for seven months and now all the sudden it’s like i’m taking nothing at all. I can’t handle the stress and not knowing. I think i’m going to have to try and get on xeljanz and pray that things turn around, and maybe that the regrowrh will happen faster this time around. I can’t explain how distressing this is to me. I have never heard of this happening to someone who responded and didn’t change their dose. Thanks for the support this is just really difficult :(
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Has anyone suffered from Seb dermatitis? Wondering if this a xeljanz issue or a me issue? I have a really bad flare right now and I don't know how to get rid of it. My derm gave me antibiotics for a week... Don't think it's going to help
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Hi new jack . I think adding antihestamine to your regimen would take care of that. I have read numerous articles of having dermatitis issues for alopecian and Allegra is advised !
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Thanks Meedo! I'll give that a shot. Did the article mention it eventually go away or did they have to pair it with something else?
Thanks!
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No worries new jack . Frida Rupert was the person that gave me some info about it being helpful alongside xelijanz . I also saw at previous posts that Katrina was advised by her dermatologist to add Allegra and she mentioned she doesn’t know why . That made me do some researches . I have been using it for 4 days now at night . I sleep better and I have a small patch of eczma on my right hand . It’s improving a lot. The research i saw only mentioned the dermatitis briefly but it go into details of how the fexofenadine stimulates the immune system in auto immune patience and some studies in Japan mention that it helps regrow hair from Alopecia patients . That’s all I know
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https://www.dermatologytimes.com/dermatology-times/news/alopecia-ne... ..... read the last paragraph
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I'm not sure what diagnosis my alopecian son had for his scalp aside from the alopecia since he's now 20 y/o and I no longer accompany him to his dr appointments, but he has been given prescriptions for a hair shampoo called ketoconazole. He was prescribed to shampoo with it twice a week. He doesn't use it very often at all because he says he doesn't need it any more.
I hope this helps!
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Newjack, I am AU (5 years) and also developed Seb dermatitis (on my face only) about 4 years ago. I do not have a bad case of it, and can usually. keep it under control with apple cider vinegar and extra virgin olive oil. The dermatologists where I live (central PA) are absolutely useless!!
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Hi everyone
I am in generic tofacitinib since February, with 10 mg daily. After 3 months (in May) I increased the dose to 20 mg. I then observed an accelerate regeneration. So far the skull coverage is about 70% (although I would expect a better results). A week ago I had a relapse in the scalp, especially in the back of the head. I've never stopped 20mg daily. There has been some stability in the growth and suddenly i have a throwback.
Ιs it possible that drug resistance has occurred?
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Hi dimitris, I don’t think the medicine stops working. I think we have flares of the disease. Meaning - the attack on the follicles becomes stronger for a period of time. Once the flare passes I think the Tofacitinib will regrow the hair lost. Some of us have more temperamental immune systems, and various factors can lead to these flares. The role of xeljanz is to mitigate these to an extent and regrow once the flare subsides the hair comes back. So I don’t think the body builds a resistance - more so our recovery is not linear, we have improvement overall but there will be set backs. I think the key is- in the long run you will have more hair but there will be times sheds happen.
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