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 Susan McAdams on
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I have been paying out of pocket since May. California offers a $700 RX discount card, which I use to fill my prescription at Costco. Any little discount helps. So I pay, on average, $2,500/month. I look forward to the new year and the Xeljanz co-pay relief!
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Permalink Reply by Sara on
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What is the Xeljanz co pay relief? How does it work and how do you enroll?
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Do u know if medicare covers this drug?
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Go to Pfizer's website and seek out a co-pay card for Xeljanz. Or call them directly and ask how you can get it. I don't recall telling Pfizer that I was taking the drug for alopecia. They don't need to know that. I used CVS Compuonding Specialty Pharmacy to fill the Xeljanz RX with the Pfizer co-pay. Back last February, it took me almost a full month to find a pharmacy that would accept the Pfizer co-pay card AND eventually knew HOW to process it correctly. You don't want to know the headache I endured over that cluster f**k. However, since I eventually paved the way with CVS, I recommend anyone using the Pfizer co-pay card do it through them. You must drop off your doctor's RX for Xeljanz AND the co-pay card (you just print it out off their website) at any regular CVS in your area. But CVS must send out the RX and co-pay card to their Specialty Compounding division because they don't get Xeljanz there on site. If anyone gets to this point and then gets stuck because CVS Specialty Compounding Pharmacy is claiming they need an "override code" to process the Pfizer card, please contact me. I can talk you through whole to ask for and exactly what to say. I have it all written down like a script. I helped a lot of people get the drug last winter. Just don't contact me before you do the preliminary stuff I mentioned above.
--Susan
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u have been through a lot hopefully u can cont to get ur med without a hitch
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Permalink Reply by macdev on
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Good evening . It is anticipated clinical human trials with janus kinase inhibitors as topical?
Could you ask your doctor?
thanks
marc
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I used the Pfizer co-pay with CVS Specialty Pharmacy. When the Pfizer card ran out, I switched to Costco because they honor this California RX discount card that takes off $700/month. When I get a new Pfizer co-pay card in 2016, I'll have to see if Costco will process it. Otherwise, back to CVS.
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Thanks Susan, if you get the discount aswell as using the co-pay card could you plz inform us. As am thinking of travelling to California instead of New York to get the tabs this time. Thanks
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Permalink Reply by Xeljanzmiracle on
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Hey Susan, how do get the California Rx discount?
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