Alopecia World
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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 ariel015 on
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Hi ! Thanks for your input, I really appreciate it.. I did go back up to 20mg over a month ago once I started noticing the active patches getting worse... do you happen to have any experience with how long it takes for things to resettle?
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Hi, it took 2 months for all my spots to get hair. I am back at 16 mg and no spots.
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Gotcha okay fingers crossed mine stop actively shedding soon then! Thanks again :)
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For me vaccines caused flares in my alopecia.... but I am not yet taking the Jak drugs so I cannot speak from experience. I hope it settles- I have heard many people in this thread mention that reducing does caused difficulty with new patches.
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Yes, I also took a break of 14 days for my first dose of vaccine and few days later I noticed multiple big spots and continued hairfall for a while. I lost all the progress I made with this medicine. Not sure what will happen when I take 2nd dose.
In India, there is one more company selling tofacitinib tablets (same chemical but different brand) to which I had switched 3-4 months back. I am not sure if change in brand could cause it or was it the gap in medicine due to covid vaccine.
For now, I started Xeljanz again.
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hello you should not have stopped xeljanz even this affects the effectiveness of the vaccine I do not want to be vaccinated for its reasons you,
I was taking xeljanz tofacinix and for 2 months I have been taking baracitinib baracitinix from beacon because I did not have a good response to the hair, I take 4mg in the morning and 4mg in the evening for the moment no noticeable change,
try taking 20mg of tofacinix to try to recover from the loss you have had, and at your 2nd dose do not stop the medicine.
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Permalink Reply by outforawalk on
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Let's remember not to offer medical advice on a public forum. I would think the effectiveness of the vaccine is more important since this involves a life-threatening situation and Alopecia does not. If it was me, I would stop anything that might inhibit my immune response unless a doctor or nurse tells me otherwise.
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This forum is where people share medical advices! Most doctors have no idea about alopecia and complete useless.
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Agreed would never forgo the vaccine, having said that my doctor never mentioned anything about stopping xeljanz when I get vaccinated! and a little late now was vaccinated last spring. I am on the lowest dose 5mg twice a day and my hair is growing back, albeit pure white. I will have to ask about this for sure!
I will say he did recommend the shingles vaccine as Xeljanz can cause skin issues, honestly that vaccine was brutal! I think too much on the immune system won't be getting the second shingles anytime soon.
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