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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 Fenster on
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Does anyone know if the hardship card applies to those over 18? My son is 13. I know the co pay card requires the age of 18. Also since we have some many contributors to this forum can someone please answer me the following question. How many taking the Xeljanz started with Alopecia Totalis and have seen regrowth. My son is going on 3 years now. Thank you for those willing to take the time to answer.
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Just wanted to give a continued update on my progress:
I now have my full beard...including the neck area.
Another "layer" of hair appears to have grown on my arms and chest...I think I have 95% of that now.
My head still has a couple of resistant areas but they are showing more growth and small sprouts of terminal hair.
My legs are finally growing hair...have gone from 1% to 5% within a month.
All areas not mentioned are 100%.
I have just recently started 3 pills a day this week to see if we can knock out the resistant areas and get my leg hair in a little faster. I will be doing this for 3 months and then will go back to 2 pills a day for another 3 months. If all is back...I will go to 1 pill a day and see how everything holds up. My first month on Xeljanz I did 1 pill a day to make sure it would be safe...I did have some eyebrow growth during that time so I think it will work well as a maintenance dosage.
Good luck to all...
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How many months have you been on xeljanz and when did you know this is really going to work?
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I have been on it for a year now. I knew it was working within the first month or two...but it was slow. The key thing to remember is that ANY progress means it is working. More research and drugs are coming out...hopefully something will become FDA approved and soon!
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That's fantastic thanks for the update cws! Can I ask are you on anything before or along side xeljanz? And what sort Alopecia did u have and for how long? Thanks
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I had AU for 2 years with on and off AA for 10 years before that. I did the steroid treatment 6 months before xeljanz. It grew my hair back but it then all fell back out after stopping. I do not take anything in addition to xeljanz. All my hair was gone for several months before starting xeljanz.
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Permalink Reply by kimberj on
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Month 10 on Xeljanz. Doing well with minimal side effects. All labs have been good.
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Looks great! My resistant areas are slow as well...they have progress but are slow. Looking to see what 3 pills a day will do.
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Hello my friend then you think with a dose of interview(maintenance) hair will not fall? Because I do not want to take the treatment(processing) and because all fall again. I am from France and Turkey is 2 am of plane and xeljanz and in 400 dollard. Dr Brett king not has no piece of news(short story) on clinical trials? If with a dose of interview(maintenance) hair remain his(her,its) shall be a terrible if all fall again
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