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 Jcortez05 on
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Can't see much bc of the lighting and the fine hair without pigment but this is just under 2 months on xeljanz I have a lot of growth in he front but only a lil bit of pigment
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Permalink Reply by Xeljanzmiracle on
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Congratulations Jcortez! I told you it would come!
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Permalink Reply by Return_life on
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I send u good vibes. Very happy. Hopefully I find a doctor willing to prescribe me xeljanz
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Hi Return life. I received your private message. Your doctor in Canada can refer you to see mine in San Francisco at UCSF Dermatology Clinic. My doctor's name is Jeffrey North. What part of Canada are you from?
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Hi Xeljanzmiracle,
Thanks for the friend request.
I really need a Canadian Dr to do the follow up, maintenance,etc.I am from Montreal. In Montreal, my health card will not be accepted by US Dr. Plus I need a Canadian Dr to prescribe it so I can go to Canadian pharmacy. The fx between cdn and us dollars is awful for us, I lose like 30% of my money. Maybe I will still go to see an American Dr but it is not ideal...
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I thought you could not get it in Canada, that's why you asked for a doctor here. At any rate, if you come here, you are closer to Dr. King or other doctors on East Coast. I'm 3,000 miles away.
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I was thinking of getting it from turkey. Yeah, sounds crazy a bit but I went already once to Istanbul once. It was amazing, so this time I'll go for something in particular. So even if I have the medications, I need a Dr to monitor me
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Why can't your Canadian doctor monitor you? All they do is check your blood work and make sure ur not coming down with any infections, etc. I would love to visit Montreal. Do you speak French?
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Yes I speak French. Let me know if u visit Montreal.true, its only monitoring but doctors here do not promote this too much. Seems they are not aware or I don't know... They also HATE when a patient suggest them to prescribe something...
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Permalink Reply by sammy on
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Thanks for the amazing information!
Anyone in Canada have a doctor who would trial this?
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Hi
Thanks so much Susan for sharing your journey in such a concise, informative and caring way! I've been on Xeljanz since June 5th and have 80% eyebrows, 100% eyelashes and patchy white/dark hair growing from back to front. (Latisse helped the eyelashes grow in darker and longer than my old ones!)
I started on 2 pills, upped it to 3 @ 4 mos and am currently still on 3. Love your hair and hoping for the same look maybe end of spring. So far blood work is good. Wishing all success!!
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