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 Return_life on
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Well u will see few challenges but it's possible.
1. Find a Dr who will prescribe it to you even if he won't do ur bloodwork, follow up etc...
2. Once u get the script go to a Canadian pharmacy and pay... should take 2 days till they receive xeljanz.
3. When u come back to the US u have many options (put medication in previous xeljanz box to show u brought from USA... bring script with you to show it's legal.
I can refer you to a Canadian dr. He does skype. I believe he is a Canadian/American dermatologist. Pm me if u want.
Around 1650$ for a box. Hope u only do 2 pills a day. Extra dose gets expensive.
I often travel with xeljanz and never had a problem. We take this medication and need to have always extra in case we get stuck somewhere for weeks.
Keep in mind 2 other things, my 1650 was Canadian dollar and was in Montreal. Prices differ from a province to another and even in Montreal prices i found were from 1650 to 1750 depending on the pharmacy
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return life. did you have full regrowth? thank you
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hey newjack. do you think its going to be fda appoved and insurance support ed anytime soon?
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I have no idea. The doctor be I've been seeing says that they will have something by 2020. They're doing so many studies and believe Alopecia is related to the microbiome/gut and they are currently studying exactly what that issue is now.
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Permalink Reply by Sidney Prescott on
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thanks for the info. 2020 isn't so far away I suppose! ive gotten pretty used to living with alopecia, so I suppose a couple more years isn't so bad, but it would be pretty amazing if they did come up with a viable treatment for us. it sounds like Xeljanz has worked for quite a few people.
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My doctor said it has worked with all her patients. So it seems that we will have a Jak inhibitor for AA sometime soon
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are you yourself on it ?
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that wud be awesome
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Does anyone know what the European regulations are for xeljanz in Europe is (Greece)
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Permalink Reply by Suzie on
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Update....the Xeljanz helped my AA, but after my scalp biopsy, I was just diagnosed with Androgenic Alopecia and I'm afraid the Xeljanz will not help with that. I'm not sure if I am going to continue the Xeljanz or not. I also have RA and the Xeljanz has helped with that, but I'm experiencing stomach issues. I'm pretty sad, but I'm not giving up and will keep researching natural alternatives as well. Happy Holidays to everyone!
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