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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 Sad_Rapunzel on
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who is your doctor now?
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-_- I see.
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Permalink Reply by alopeciaguy1990 on
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when did u start seeing regrowth?
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Permalink Reply by Rascalx2 on
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Damn newjack! Its thick good for you! Mine came back but never the thickness it was before going au... i have spots come and go because i go up and down w dose but just got haircut today, never go to short in back because of the smotth bald spots can get covered well w litttle length... its nice when alopecia us not consuming your first and most thoughts through the day,
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Looking good NewJack!
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Dear Boy Newjack! (sorry, but with THIS HAIR you must be really young teen :) )
Are you kiddin'? It's like slap in the face in this rainy saturday morning. You have gorgeous hair! And you are so right if you start notice thinning and same moment run to doctors and start your treatment. On my early stages no doctor or hairstylist told me I need to be worry, they calmed me down that I have seasonal thinning and it will go awat soon. So I started to see doctors when I left with 1/6 of previous volume...
But man.... I wish I'd have your hair right now... Not even my long locks, but at least all scalp covered thick wavy hair...
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Sad Rapunzel,
New Jacks hair is lovely you are very right but he actually went AU, so no hair, before he got treatment and had a great outcome. These are the results of treating the condition, not all achieve 100% regrowth but many do. His anxiety I think, is not so much to do with how his hair looks in terms of thickness, but because he lost all his hair and even when only tiny spots appear is terified it is the start of AU, as he has been there.
I think in your case it important to determine what type of hair loss you have as the treatments vary widely between the different types. Nutrional needs to be treated by diet and vitamins, whereas autoimmune needs( for more serious cases) something to suppress the immune system either in a targeted manner (jaks) or blanket immune suppression (methotrexate, cyclosporine, biologicals). If it is hereditary other treatment are out there too... though most relate to minoxidil (which I note you are frightened of taking - though honestly minoxidil is a pretty easy fix for many with minor hair loss and the side effects are manageable - ie- extra hair on face and body (easily removed permanently or temporarily). Have you been diagnosed 100% with autoimmune alopecia? If not this is key. Then you can determine your treatment options and you most likely will get your hair back.
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Thank you for your reply
I have an appointment on Monday with yet another dermatologist, so i will let you know what she thinks... Because my previous doctor insist on biopsy only and still telling me that Rogaine is the only one miracle-solution.
I am afraid of biopsy. I am sure it will not grow back, and I know that experienced doctor who knows your history could tell you the reason of hair thinning and loss without biopsy.
I hope I will be prescribed with xeljanz, because this results leave me hope. Otherway I don't see any positivity in my whole situation. I'm sure you all hate me already, but this is such a painful experience.. I know you all have so much worse to survive then I am going through right now, but I'm not as strong as you are guys... I'm sitting at home all the time, and go outside only for emergency and work. I stopped enjoy workouts. With all my fitness experience and goals for flat abs, I received loss of periods, almost bald head, highest cholesterol with xanthomas and so far with such a lazy workouts i lost that shreded body I was fighting for and made all my restrictions for. My life went to nowhere all that time. God hates me.
I don't see a way back.
If on Monday that doctor will tell me that rogaine is my option, I will snap. Because I'm hearing about it for two years and sure it's not for me. But if She will tell that I just give up, with everything, I will not do anything anymore. I will calmly fall down.
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Sad rapunzel,
have you been diagnosed with alopecia? Did you try approach of getting your nutritional needs in check at a healthy level meeting with a licensed dietician or nutritionist? Have you ever been diagnosed with anorexia? Just want to ask these honest questions to you, not looking to harm you in any way. If anything i hope you get better, maybe lay off the “shredded “ body. I wish you the best.
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Nice head of hair and eyebrows too! I completely understand your fears. My hair is coming in curly and thick. I'm constantly shaking it to see if any falls out!I I remember telling my girlfriend that if my hair grew back I would be the happiest person in the world. But now that it's grown back, I'm plagued with the fear that it could all suddenly fall out again and I would be completely bald and starting over. Or getting sick and having to stop the medication! Having a set back can be devastating.
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