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 Xeljanzmiracle on
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Lindadarnell, below are my latest regrowth pictures: To see regrowth pictures of other Xeljanzers scroll thru Alopecia Destroyed My Life's Discussion on the main page. There are over 3100 replies on there and a lot of important shared information.
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Permalink Reply by lindadarnell on
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That is great progress. I've attached a few of my photos taken at a little over 4 months on Xeljanze.
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20160403_184154.jpg, 3.9 MB
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20160403_184204.jpg, 3.7 MB
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Wonderful Linda, its exciting isn't it? How long were you AU?
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It's been about 5 years. I had hair to my waist (beautiful natural dreadlocks) and it all fell out over about a 2 week period and never grew back until now. So yes, I am very excited and thankful.
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Wow Linda, natural dreadlocks to your waist! That took years and years to grow and had to be devastating to lose. I know that I personally will never cut my hair again after this. Maybe a teensy, eeny, meeny, miny trim one day, lol! I haven't even plucked my new eyebrows. Just letting them grow wild. Have yours started coming back yet? Any eyelashes?
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Linda,
I am so very happy and excited for your new growth! Congratulations!
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Hi there
how are you everybody ?
My Update I'm just finish my first battle of Xeljanz 2 pills for 1 month have been
and I saw a little very small white hair in my eyelashes and eyebrows , but I would like my opinion to up the dose to 3 pills what you think guys or I continue 2 pills normally dosege
BC I think when we up the dose it will come fast grow
waiting your recommend !!
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Permalink Reply by Susan McAdams on
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I'm replying to Sultan, below because there is no reply link after his/her post.
I would not increase your dosage. You have only been on the drug for 1 month! You are lucky to see even one hair yet! I had nothing for 3 1/2 months in. I have not heard any evidence that increasing dosage makes the hair grow in faster or fuller. It's just a waiting game and everyone is different. Those who are on more than 3 pills a day have typically done so because they were not seeing any growth after 3 months. So sit tight. I believe you will see great results in no time!
--Susan -
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Hi folks--
I just spent the weekend at Coachella making sure my daughter didn't get into any mischief. It don't recommend it unless you are younger than 25 or have a group of friends to attend. So many crocheted halter tops--ugh!!
But here is a photo my friend took when the dry desert winds were kicking in. I wish my hair looked this great every day!
--Susan - Attachments:
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image.jpeg, 256 KB
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thank you Susan . you gave me awesome information about high dosage, I will continue 2 pills per day , and also I will defiantly tell you Any progress
Susan you told me in 3 1/2 you saw first progress Right! so when you regrowth all your body how many months?? you really Very Patience
you are Our Leader here Susan hhh
Sultan
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Thank you!
I'm hoping to lead here to inspire others to share their stories. We are all in this together!
Hard to recall when I saw body hair start. I believe I noticed some leg hair and brows around the 4 month mark. Eyelashes around 4 1/2? Everywhere else starting around 5 months in. If you look back on my older posts, I may have given those timelines.
You just have to be patient! You waited this long--what's a few more months? If you are seeing anything at 1 month, that's great news. May I ask your age and gender? It seems that younger folks get earlier regrowth, and more often makes get it back earlier, too.
--Susan
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