Alopecia World
www.alopeciaworld.com
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
-
Permalink Reply by Newjack on
-
Thank you, I am crossing my fingers that I somehow can get the insurance to cover it.
-
Permalink Reply by Suzie on
-
Newjack, I am hoping you will also have your insurance cover the Xeljanz. It's such an expensive drug that no one should have to pay that much for treatment.
-
-
I have Aetna and they're currently covering it for me. Took an application, an appeal, and eventually NYS Dept of Finance to step in to overrule Aetna's first two denials. So more like they're being forced to cover the medication. Happy to provide more details if you'd like to message me.
-
-
I live in NYC so this is great news hearing about this. I will send you a message.
I never knew the financice department of NYS could step in and over rule. Before I could send you a private message I need to add you as a friend.
I'd love to know the technical details and what exactly needs to be done and what to be prepared for.
-
-
Hi cmd, I am very interested in how you got them to cover. I was denied twice by Aetna and finally gave up.
-
Permalink Reply by Sidney Prescott on
-
Does anyone know if Xeljanz, or any other JAK inhibitors are approved yet for treatment? I noticed this was posted a couple years ago, so just wanted to check in? I would be very interested in trying this drug
-
-
It's not approved for Alopecia and it costs 4k a month. We should have a better course of treatment in the next 2 years.
-
-
$4000 a month?? for the trial? :(
-
-
You can get 3 months for free and yiuncan get a year free if you apply for xelsource but there are some stipulations. If you do get the medicine it's 4k a month with no coverage. They only cover it for RA
-
-
what is xelsource? where can I look into this?
-
-
Xelsource is only in the USA
Xeljanz in Canada is 1600 a month
-
Permalink Reply by Susan McAdams on
-
Hey there—
I didn’t know Xeljanz was available in Canada and for so much less. I never had any interest in pursuing it in Turkey or Mexico because frankly, I don’t trust the regulations, or lack thereof, in those countries. Are you a Canadian citizen, or are you able, as a USA citizen, to legally see a Canadian doctor and get it prescribed in Canada? I do not want to do anything illegal, nor smuggled drugs out of a country. But, if it is a legal option for us, please share your knowledge on this topic!
© 2024 Created by Alopecia World.
Powered by
