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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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Replies to This Discussion
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Permalink Reply by singh on
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Rach1992 I genuinely understand your concern but do me a favour and inbox me and il tell you exactly what my doctor told me who is specialised in the skin and alopecia department. I can't be bother having a debate so negative on Owens post which he has not only for himself but give hope for everyone else . So plz anyone inbox me and il give you my opinion with some facts and you give me yours which even make me understand your opinions ! And no I am not one of them people who will do anything for my hair back as I study a helathy background. Look forward to your inboxes xx
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Permalink Reply by Rach1992 on
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I don't want to debate. I only posted to spread awareness for people reading the forum because most of the readers on this forum are either taking Xeljanz or are considering taking it. No harm, no foul. The reality of the situation may not be a popular thought, but it's an important consideration. Take care
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Sorry Rach 1992 debate was a strong word to use. I just meant inbox me and we can have a lil discussion on this with the things I have been told by my doctors and the information you have been told to. I do think your 100% right on your concerns and everyone should listen to them and be very informed and Have proffesional supervision before and whilst on xeljanz. And me personally I don't want to stay on it forever Cz I do believe it will be them dangerous but using it as a bridge till better and safer treatment or cure comes out. I strongly believe we will have better treatment even towards the end of the year and next and hopefully a cure or safe treatment in the months/years coming. So just confirming that I wasn't trying to have a debate and want to thank you for your concerns and informing anyone who once to start this treatment. Have a blessed day everyone.
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I feel, you. and yeah, I am so stoked on the cream version! If anyone hears about more research with it- please do share! All is well, if you could hear my voice intonation throughout this conversation it would have been relaxed and stuff. haha but really xjelanz makes me really excited about alopecians' future!!!
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Permalink Reply by Susan McAdams on
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Thank you, thank you for that response! I, too, started a discussion on this site as soon as I was accepted into the Stanford trial last January 2015. I wanted a safe place for Xeljanz users to discuss Insurabce issues, prices, outcomes and any side effects that may have occurred. Other than some acne by a few users (my skin is actually better than it has ever been in my life!), I haven't read of anything else. Except that those who stopped or reduced the drug frequency started losing their hair again.
I am so exhausted by the comments that pop up by site memebers who list all the possible side effects of the drug. We don't need those scare tactics, and we who take the drug are all intelligent enough to have read over and discussed possible side effects with our doctors. Enough is enough, please! Let us get to live our lives again!
For those interested, I started a new discussion called "Xeljanz Users...Let's Stay Connected Here in 2016!" This is not a discussion for those trying to scare us away from the drug. It is a place to post photos, share our experiences, and learn from each other.
--Susan
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Totally agree Susan well said and I also thank everyone's concern! This certainly is a great place to share thoughts on which ever treatment.
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Susan. i don't think anyone here is using any tactic to scare anyone. I think they're just trying to help, in my case I was unaware of the high rate of occurrence of the side effects I indeed read in the leaflet.
what it seems is that everyone is welcome here to post the positives, of course as long as they don't write anything negative, and this is not the way
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As someone with alopecia universalis who also wants treatment and dreams of being cured, I wasn't using "scare tactics" but was sharing my experiences in learning/reading many studies about the drug that surprised me. This is a public forum for all people on alopeciaworld. Just don't read over the comments you don't like :)
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Happy New Year everyone. I don't post much but I read this thread almost daily. For those with universalis or those people that lost their eyelashes and plan to transition to the cream or do not plan to start treatment until the cream is available, what are your plans to maintain or grow your eyelashes after transitioning from oral treatment to the cream? I know we don't know the safety profile of the cream yet, but do we risk blindness by placing the cream on our eyelids? Also, would you guys be ok having hair on your head and face without hair on the rest of your body? That may not be an issue for women but may be a concern for men. I am assuming that we will not receive enough cream to treat our entire body. Thanks
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Permalink Reply by Xeljanzmiracle on
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Hi Dmac, welcome to this thread. Simple answer: we don't know. There is no Xeljanz cream available yet for purchase, although some are contemplating compounding their own. A recent case in Yale News involved a 17 year old girl who used the cream on her scalp and eyebrows with substantial regrowth, but then she switched to the oral form, for the rest of her scalp and her eyelashes. This discussion is USUALLY a very pleasant. respectful site. The majority of us ON XELJANZ try to uplift and cheer for each other and celebrate every hair regrowth milestone. Please ignore the negativity and rude remarks that have been on here lately. What is your alopecian background?
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