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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 cmdd20 on
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I'm about to finish my third month. Been on 2 pills per day up until last week, bumped it to 3 per day. Substantial facial hair regrowth (which became noticeable in month 2). Some scalp regrowth but wouldn't call it substantial yet.
In terms of side effects, nothing out of the ordinary until this week. Had stomach flu which lasted about 1.5 days. Started feeling better yesterday. Don't know if its related to the medication or not (coincides with bumping dosage, but also had spent the prior week in Mexico, mom was dealing with same ailment, big change of weather in NYC).
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Permalink Reply by Xeljanzmiracle on
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Rach1992, thank you for your concerns for all of us. Perhaps you are not aware, but this a discussion started by a XELJANZ USER (ADML) who started taking it in the summer of 2014. You might want to go to the beginning of this discussion and read his background etc. I have personally read each and every reply on here since the beginning and this is why I can make this statement. "The MAJORITY of people on this site have had no negative side effects on Xeljanz." When I say the majority, I'm not talking about 51 percent. To be honest, a few have reported acne flare ups, but thats been about it. Since you have never ordered Xeljanz and received it, let me tell you that EVERY SINGLE BOTTLE comes with the side effects warning every month. When I first applied for it thru Pfizer's hardship program they sent me the side effects informatio in advance. Its also available on the internet. Those of us on Xeljanz ARE AWARE of the risks. The drug was already approved and used by millions for rheumatoid arthritis before Dr. King tried it on Kyle for his psorasis and AU. Its interesting to me that the ONLY persons on this forum against Xeljanz are people who haven't tried it at all and have absolutely no experience with it. As Singh pointed out, thousands will lose their lives all over the world TONIGHT because of an abuse of ALCOHOL from drunk drivers. Millions of people are ruining their health and damaging their lungs and BRAINS by smoking cigarettes, marijuana and cocaine (crack). We on Xeljanz however, choose to enjoy ourselves by looking in the mirror today and running our fingers thru our new hair. Hallelujah! And thank you ADML, our BRAVE XELJANZ WARRIOR for starting this blog of hope and encouragement for us. As he said last week, "Hairy New Year" Everyone!
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Permalink Reply by Rach1992 on
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I'm pro Xeljanz because I'm stoked for the cream form. I'm sure most people, if they thought about it, should wait for the cream version because it has nearly no side effects. Drinking alcohol and doing other drugs is a non sequitor-it's unrelated. I'm sure most people don't read the bottle JUST LIKE no one reads "agreement clauses" on website and when downloading apps on your phone. Like I said- I'm just spreading awareness. Happy New Year.
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I think Rachel brings up some really good points and I understand where you are coming from rach. Xeljanz miracle is correct that mostly everyone hasn't reported any side effects. I think what many of us have to be worried about are long term side effects. That 2% chance of getting an immune cancer sticks in my head every time I take that pill. For me though having hair has been worth the risk for me .. Everyone has to make that decision on their own. I don't think there is anything wrong with people having negative feelings towards xeljanz.
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Also, I think that many of us Aren't experiencing many side effects because our immune systems are TOO strong. Hence the reason for this a awful disease. Xeljanz does alter the way our immune system works and it targets all of our T cells
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Thanks for understanding where I'm coming from, Katie :) I don't want to hate on it, because I would take it in a heartbeat if my conscience/intuition would let up (plenty of cancer in my family, too) but I also understand taking the drug. Plenty of drugs have bad side effects and people take them every day. These side effects shocked me at first though and given how many people were taking the drug on alopecia world I assumed some people probably don't know the side effects. But it's all about informed consent as they say! Good luck - I hope all your hair comes back and I hope you're keeping up on your bloodwork :)
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You are right, it is all about informed consent. No one can pressure you to take this drug, it's a personal choice obviously. And if you have negative feelings towards it you have the right to - this is an open and friendly forum at least it should be. My doctor sat me down before starting it and said straight out that it could have a lot of potential side effects and she explained them all. but she also said that I am young and mostly won't experience any. She did however say though that we need to worry about long term effects. On that note though, I have been on xeljanz for six months now and went from Almost AU to complete regrowth. My wedding is in June and I am so happy that I will have hair for it!
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that is very exciting to hear. also all the hair (brows, lashes, head hair hehe) looks amazing! seriously though can't wait for the topical version. it should come out soon too and you can always switch to that! congratulations on the wedding! :)
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This brought tears to my eyes.... Did you really regrow all of that in six months? So beautiful.... Did it start to grow back patchy or full coverage from the beginning?
Thank you
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Yes. You can read my discussion "From Totally Bald to Regrowth in One Month!" and see all of my regrowth pictures for the last 6 months (yes patchy) on the front discussion page right now.
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