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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 Rascalx2 on
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I did both , I had the same results when taking 20 mgs a day. I want to get the 11 mgs pills beacause it is more conveniant. I would take 5 mg am, 5 mg miday, 11 mg at bed
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Permalink Reply by NYC_Gal_1981 on
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My doctor said the 5mg 2x a day is better - not sure if I see difference but just passing along.
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I started with 11mg once a day, it's a little stronger and less abusive on the stomach and lasts 24hr. I was having great results then too but wanted to see my hair grow faster.
My doctor didn't say which is more effective, just those words. I did however implement an extra 5mg pill in the morning and will soon drop back down to 11mg for maintenance.
With my initial first 3 months on 11mg my doctor is confident I will do just great on 11mg. I won't lie I am a little scared to drop back down, even though she calls me a super responder. I will most likely drop back down in August/September. My one year anniversary when I found my first AA patch.
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I recently stopped xeljanz and most of my hair fell off after 2 months of stopping. I've gotten back on the medication (been a month in) and I think shedding has slowed down a little bit (not stop fully though) - just wanted to get feedback on whether others have had this issue and if so, if regrowth happened in your case. Let me know, thanks!
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I went down to 15 mgs from 20 mgs and had lot if shedding and lot of bald spots in back, top thinned out alot. Back up to 20 mgs... if i were to stop it would definatlwy fall out again. The 20 mgs was hoping to slope down a little to mak it last longer ... what i have been doing is 15 mgs one day then 20 mgs the next day... i think it works. It seems like the shedding has stopped ir stabilized for now
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@rascalx2 - has your hair grown back after the shedding or too soon to tell? I haven't seen new growth so just curious if you have (in addition to reduction of shedding)
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No growth yet , it has only been over the course of a few weeks. Derm gave me couple shots of kenalog injections in the bald spots and that usually helps with a little boost.,, last time he did it it grew back, comes in white at first.., it was the first to go w last shedding. My hair will never be as thick as it was before getting beat with the alopecia stick, but i also dont look like im having chemotherapy. I do feel i have become more dependent on the injections....
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Just wanted to share a quick update...
First photo: July, 2016
Second photo: today (July, 2018) (Thank you, Xeljanz!!!!)
Ive been on Xeljanz 23 months now, and my hair has been growing well for about 18 months (with one quick setback from January - April of this year when a few areas started shedding again). I've been on mostly 20mg/day.
Stay hopeful <3
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Wow Katrina, you look great. When you started shedding again did you change anything? Did you lower your dose? Or did you just let it ride till it stabilized?
I woke up this morning and ran my hands through my hair and noticed a few broken hairs much shorter then the hair on my head and got scared and still am, did a pull test nothing but when o rub my head like crazy I see a lot of stubble everywhere from.my scalp yet my hair is at least a half inch long at the moment.
I've been on xeljanz for 6 months and I'm still so scared, would be so appreciate to hear your insight and experience.
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For me, I think my set back was caused from using a dry shampoo. I used that instead of washing my hair with shampoo too often (because I was always told, if u want Hair to grow don’t wash it a lot!). Turns out I was spraying the airsol dry shampoo too closely to my scalp and it clogged my pores and caused an allergic reaction. It felt like a sunburn for weeks. I did not change anything- I just Road it out (and obviously stopped using all Hair spray type products).
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Wow ok, so nothing changed with the medication and it all came back on its own?
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