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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 bibby on
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I would say 2 major differences . (1) No painful jabs in the head leaving massive lumps on your scalp. (2) Xeljanz and Ruxolitinib actually works. I have actually never heard of cortizone (pills or injection) growing back someones hair. cortizone (pills or injection) seems like some kind of barbaric treatment that derms were convinced would work and stubbornly refused to accept was useless for hairloss !!!!!
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Permalink Reply by Xeljanzmiracle on
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Wildstar, you were going to the dermatologist on March 8th to get your prescription for Xeljanz. What happened? Did you ever call Xelsource to get your Hardship Program Application? You take that to your dermatologist and they fill out one page and you fill out the other.
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Permalink Reply by Rach1992 on
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Cortizone injection never helped me and doesn't help many people with extensive or even minor AA. It also causes bone marrow issues over time.
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bibby
I'm totally I gree with you
cortisone never grow hair
for must people
this is the second day I eat
2 pills Xelianz . I have AA
but actually I'm afraid from maybe
doesn't grow my hair
but i have time and hope
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I got about 10 sessions of cortizone shots in my head when I was 10 years old. All it did is blow my head up., all I remember is itch , red skin and swelling and ZERO benefit to the hairloss. I felt like a concentration camp experimented victim. Just over 30 years later I horrifically hear they STILL call this a treatment !!!!! Unreal stuff. Best of luck on your new treatment sultan. I am also AA so I will be waiting with you on any improvements. I will be starting Xelianz in July (already have my Turkish airlines ticket bought) ! What level of hair loss % are you experiencing presently ?
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bibby
I have AA and 9 little and big patch
of alopecia in my scale head and no eyelashes
and 10 per of yeybrows .
it's still full out my hair
when Xeljanz stop falling you think!
please help me and give me hope
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I cant give false hope to you Sultan as I am like you , a pure learner. I hope the fact that you and I have AA and not AU that the response will be better/quicker although I have no evidence or medical knowledge to back this up. AA and AU may react at the same random response rate. Number 1 thing is STAY POSITIVE. As this forum has demonstrated there is fantastic results on this drug and if , in the unlikely event that you do not respond favorably, there are some major developments in the field of treating this horrid condition of ours . Keep us all informed in your progress and we are all in the fight together
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Permalink Reply by thanmikron on
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Guys, I reall started being very suspicious with this group now. Cortizone is the only method tha has been proved as effective and you can see it anywhere in the website you visit or any doctor you talk to. It is shocking to me that you are all so against it now and you much more believe in a treatment that is in the very first steps, that hasnt been proved as a treatment or cure and NOONE knows about the future possible side effects!!!!!
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I think a lot of people are on this website and are trying Xeljanz because cortisone is no longer (or never was) effective, myself included.
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Obviously it is not ideal but we cant state that its not effective at all. its the No 1 method as of now. E.g. google "alopecia areata treatment" and it is the first treatment you will read in all the first websites. unfortunately it is still one of the most effective compared always to the new drugs like X and R.
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Permalink Reply by Lindzzej on
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I've had cortisone injections or kenalog injections for years....thank god bc I don't know where I'd be without them. Do I want to get on Xeljanz? Absolutely. But it's proving very trying to get the drug.
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what about the autoimmune paleo protocol?
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