Alopecia World
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Xeljanz Users...Let's Stay Connected Here in 2016!
Hi Friends--
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
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 sultan h on
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Hi everyone..
i saw a lot of great people how very good respond on Xeljanz for them,
actually I have been 11 days now on Xeljanz, I know still I have time
but seriously I'm afraid if I'm not respond what I will do at that time
sorry for say that but that always Think in my mind , I can't forget it,
I will promise you guys If it work I will update all photo I have .
you all guys became my best friend all of you
every weekend my assignment to see all your responses
thank have a good day
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hope to get very good results with it Wildstar
how long have you been use Xeljanz wild star ?
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Permalink Reply by Xeljanzmiracle on
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XELJANZERS CONVENTION! I am planning our first annual Convention in the San Francisco Bay Area this summer. Who would like to come and share our success with Xeljanz and meet in person? We are the original pioneers but soon there will be millions of us. Let's start getting organized!
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Please count me in. I've been on now going into my 5th month and have growth all over. I live in the east bay area so it would be great.
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Lindadarnell, CONGRATULATIONS on your regrowth! I live in the East bay too, in Oakland. You and I should get together soon. I will send you a friend request so we can pm each other. Valeri
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Permalink Reply by Susan McAdams on
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That sounds like a FANTASTIC idea! I will be there if I can. I am traveling a great deal this summer, but if you plan anything before June 20 or anytime during the month of July, I'm in!
--Susan -
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Hey WS, just wanted to let you know that i have been doing vegan and gluten-free as well for the past couple of years and have seen great results. I didn't have a single hair on my body before starting. Now i have vellus hair all over my scalp, chest and groin area
:)
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Great Wildstar, Looking forward to meeting you and your wife in person. I will be taking suggestions for topics for the Convention from this forum. And also we can all tour the Bay Area together.
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Hi Victoria Good to see you here
Welcome to Xeljanz World. hope to find out your dermatology to prescribe you Xeljanz soon
to help your hair,
Sultan ,,
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Welcome Victoria. Xeljanz is not sold in UK, but my friend Singh, from Liverpool, has made two trips to the U.S. to get a 4 month supply ($12,000 worth) for free using Pfizer's co-pay card. He also has a New York dermatologist who prescribed it for him. Private message him and I'm sure he will be happy to help you. For more info about those of us who have had success on Xeljanz start reading Alopecia Destroyed My Life's Discussion on the main page of this forum. There are over 3,000 replies and pictures on there of those of us who are on Xeljanz and have regrown our hair! Most of us have had no negative side effects. I wish you the best!
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Tap on his name. He posted earlier today. Then tap on send message. It will tell you to add him as a friend. After he accepts you can pm him. Or, reply to his message from this morning above and ask him to pm you.
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hi eveyone
my update: 2 weeks and half
I'm not seen new hair yet! but I think my scale is better that before
and my nais became strong , yes I agree with Susan she said cycle of the hair 3 months . and I guess all people how use Xeljanz need at least 3 months . thanks you
have a good weekend
sultan
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