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 Sharalexis on
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good luck u make me have faith in mankind!
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Beautiful... Great photo
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Hair Loss Pills - http://www.foliactive.com I started using Foliactive thanks to a good friend’s recommendation and the truth is it’s working very well. I already got some of my crown hair back and I feel that, in fact, my hair’s stopped falling out so much.
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Permalink Reply by Lee on
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First, you look so amazing! I am currently on Xeljanz, 5mg twice a day. What is your dosage?
I have been on it since October, I am hoping against hope that it will bring back my beloved hair.
Next, I am wondering how severe your alopecia was when the study began?
Happy holidays and continued success to you in 2016!
Lee
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a big issue for me was acne. it was too much for me. as much as i want my hair to grow back, i could not deal with the breakouts. it been a few weeks since my last dose, so far no excess hair loss. i am thinking of restarting next week.
does anyone else have this problem with acne as a major side effect?
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Ask your Doctor about using doxycycline...it took away the acne in a few days for my daughter. That's what Dr King prescribed. Good luck
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I had acne as a side effect but my dermatologist prescribed me a benzoyl perodixe foam and that keeps the breakouts contained. in 4 months I have had pretty much 100% regrowth. My doctor was floored. I'm at 6 months right now and I have 2 inches of hair all over and I was AT before treatment. So I can deal with the acne flare ups with the promise of no more wigs in the future :)
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I was diagnosed with RA about 6 years ago. 5 years ago around thanksgiving my hair began falling out, within 2 weeks it was all gone. I ended up losing all body hair by the end of the year. Fast forward 4 years I read an article about a man who used the Xeljanz for psoriasis who also had alopecia. I saw my rheumatologist July 7,2014 and asked if he would place me on this drug, within 3 months my hair was coming back! Today it is long enough to place into a small pony tail even. I do have a couple places where the hair has fallen out and my hair is much thinner than it was initially. My rheumatologist has documented and has told the drug reps about my success and there has also been another woman who is beginning to experience regrowth with this drug. I can also say my rheumatoid has also improved. The photos are throughout my growth process from September 2014 to today!
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Wow when did you see regrowth ? At what month and dose? You look awesome !
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