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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 Football fan on
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Finding the right dose is not that easy.This is an expensive drug not covered by insurance and even on the xeljanz hardship program they arenot going to give you 3 or more bottles a month.Getting the drug from Turkey you would have to order a dozen bottles at a time if your taking more than 20mg a day.Non responders are screwed
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Permalink Reply by Rascalx2 on
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It works good fro ulcerative colitis which is auto immune and i have, it has just been approved for treating u colitis and it is prescribed on the higher end dose of 20 mgs
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Mate very happy for you that it is working for both of your conditions! Seems like jak pathways are related diseases!
A lot of praise needs to go to these researchers/scientists too.
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Anyone here use the xeljanz and then go off of it? Did the regrowth go away for you?
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Hi from what I’ve heard most people who go off xeljanz start to lose hair.
I think it’s important for people to remember this is a treatment rather than a cure.
how ever some people on here have gone off xeljanz and maintained there growth or evenonky taking a low dose and a tablet every other day.
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If i decrease xeljanz dose it falls out , not for about 3-4 weeks. So try decreasing dose before going off it if your experimenting w taking it ir not.
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Ah ok, not on it currently.
How bad was your Alopecia before you got on it?
I am scared to take it b/c of the side effects, probably take it forever, and I hate blood tests(big phobia of needles)
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I was not worried about side effects, taking xeljanz to trial if its worth it was not gonna kill me, i figured i would take it a few months see if it worked then weigh risk vs reward... looking back at my “chemo”look ,i ll continue to take it... it was painful to be AU more then having blood taken, if your tough enough to deal w alopecia then your tough enough to have some blood drawn!
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Hi, I just started Xeljanz 2 days ago. 10mg a day.
I have almost full AU since I am 23 and now I'm 29. I am already ok with how I look and wasnt really looking for a "cure".
But I was told about Xeljanz by my sister who has friend who had a friend who used it and got his hair back. She literally made an appointment with a doctor who prescribed me with Xeljanz and she bought 3 bottles for 3 month treatment.
Coincidentially las 2 months Ive started to regrow random hair in differente body areas.
Ive never tried any treatment and I am not really an extremely healthy person, I try to eat well when I can, I play sports (football a lot) but I drink alcohol and smoke weed regularly and and cigarrettes sporadically, So I wonder if that could affect Xeljanz effect in any way?
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Any Regrowth on scalp?
Did insurance cover it or you pay out of pocket?
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