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Xeljanz Users...Let's Stay Connected Here in 2016!
I want to thank so many for following my discussion link, "My Stanford trial experience, Part 2 (Xeljanz)" throughout the bulk of 2015. I began participation in the trial in late January, got my first RX for Xeljanz in February, and started to see the first signs of regrowth 3 1/2 months in. After the trial ended, I opted to stay on the drug, and now I am a post-trial patient for the doctors at Stanford. I will continue to fly up there from Los Angeles once every 3 months or so to provide them more data with the hope that maybe the FDA will one day approve Xeljanz for alopecia! As long as my bloodwork remains healthy, I anticipate staying on the drug for the forseeable future. I have had no negative side effects on Xeljanz since I started. If anything, it has calmed down my overactive immune system and possibly helped settle some food sensitivities I had been developing last year.
I am starting this discussion because I really hope those of us who are currently on Xeljanz (or are about to begin) will want to keep tabs on each other. I have read some posts on other links where patients stopped or reduced the drug, and their hair began to quickly fall out. However, I DO know that alopecia can go into remission. It did for me from early 2009 until the end of 2012. Four years of spontaneous remission! With no drugs. I hold onto hope that Xeljanz may help push some of us into remission, allowing us to taper back on the dosage for some time without devastating relapse. Maybe that's not in the cards. In any case, we are the lab rats right now! So, we need to look after each other and share our stories--whether they are good or bad. My attached photo shows me a week ago--12/15/15. I will continue to post more photos as time goes by. Please all do the same. Let's band together in 2016 and get some viable treatments approved for this cruel disorder!
XO
Susan
Replies to This Discussion
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Permalink Reply by Suzie on
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Anyone on Xeljanz having any luck with regrowth with 10mg a day? It seems like everyone has to take more in order to see growth. I have been on Xeljanz for approx. 3 weeks prescribed by my RA doctor and I am on the 10mg. a day.
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Permalink Reply by Xeljanzgirl on
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I have been on 10mg a day since last January (ish) and have complete regrowth, and eyelashes !
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Thanks Xeljanzgirl....how long is your hair now? and January 2015? Any side affects?
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It is a few inches long, I still wear a hair piece as it is not long enough for me to feel "comfortable" without it. Yes, January 2015.. I started out with 1 pill for about 6 months and had minimal growth, then I went on 2. I have had zero side effects, blood work has been normal and infact I have been less sick then my family and friends (knock on wood).
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Thanks!! Best of luck to you as well!
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hello! any chance you can point me in the direction to get xeljanz? I need more and my insurance will only give each patient one three month supply once a year!
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Hi thank you so much for this discussion. I am wondering how long do you think it will take for fda approval and for this drug to be standard drug for alopecia..I guess you might know because you are in contact with doctors performing trial..
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Permalink Reply by Kristin on
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It could take years...
But, your doctor can prescribe it to you since it's been FDA approved for RA. It's just up to your insurance to cover the cost or not. My insurance covers 100% right now. Part of me doesn't believe it'll cover it forever, though... Without insurance Xeljanz is about $4000/month.
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hello! do you also have RA? was your doctor able to prescribe this without having it if you don't? I know its awful, but can you fake RA and have your dr prescribe it that way? I am desperate......!
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Hello! I am on day 2 of xeljens 5mg 2 Xs a day. My dr said I have about a 65% chance of it working. It will either totally work or not at all she says. She also explained the insurance company will only give patients one 3 month supply once a year for free. If it works I will be desperate to get more. Let's help each other get through this! Let's stay updated on our statuses. I am very concerned about the serious side affects of he medication but I am desperate. I am a 31 year old female from Orange County CA. My AA started 4 years ago and has never stopped. My hair is constantly falling out, then as it's growing back another group of patches decide to join in the fun! I hope this medicine works for us both! Any clue on how to find this medication without emptying my bank account if it works for me? Good luck to you!!!!!!!!!!
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hi susan! are you still currently taking xeljanz? I am trying so hard to find more. I am on my first three month supply, and insurance will only give one three month supply once a year! I am in desperate need for some help here getting it. I wouldn't mind flying to Stanford, I also live in the LA area. I am in orange county. did they get you a prescription right away? I went to UCI and that is where I got my first prescription. thanks!
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