Alopecia World
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Xeljanz Users...Let's Stay Connected Here in 2016!
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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That is terrific news! I'm so happy to hear it when we help each other out! Good luck and please keep us all posted!
--Susan
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Permalink Reply by Sad in chicago on
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Thrilled for all of you who are having success. I am originally involved with this site for FFA, frontal, fibrosing, alopecia. Any thoughts or comments or research on whether it would work for us? Thanks,
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Happy to you wienchee to get Xeljanz soon,
I'm also on Xeljanz for 1 week Hope everything going good
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I was on Xeljanz for 11 months and had very good response. Then the study ended and after 4 months I am loosing my hair. Eyebrows etc...I just started on the meds again a few weeks ago. I hope it will reverse my relapse!has anyone been off their meds and then resumed? How long did it take to reverse the relaps? Or did it not reverse the relaps? I'm very upset:/
Thanks:)
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Thanks for sharing, Sara. And sorry you are going through this. This is indeed what is happening when people go off the med. You had probably the longest time span before you started to see shedding.
Your question is the big mystery. All I know is through others--one patient of Dr. King reporting through his words that patients who relapse due to stopping the med can expect regrowth again when back on it. But, its unpredictable how soon.
So, your story is REALLY important here. Please keep us updated. I am confident your hair will grow back since it did before (if you stay on Xeljanz, now). But the data you provide as far as time lines and amount of regrowth is crucial. Please stay in the loop, and we will all root for you!
--Susan
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Permalink Reply by Xeljanzmiracle on
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Sara, how long did it take to see regrowth the FIRST time you were on Xeljanz? I'm thinking that will be a good indicator for you.
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As much as I hate the AU I have, I am reluctant to go on Xeljanz for fear of losing hair once I go off of it. The jury is still out on how long a person can be on it and no way Pfizer is going to provide the pills free forever. I sure can't afford the monthly cost to buy it.
Not to discourage others from trying Xeljanz because it does work. Just my point of view.
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Hey mtran2000, why don't you check out the scalp micro pigmentation treatment (SMP) mentioned on front of discussions page? I watched Ken's video and it was pretty cool! No side effects.
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I want my own hair back and I think now that there is a medication that can regrow hair in AU, there will be more breakthrough products coming. Hopefully more affordable.
Has Pfizer said how long you can get the product free?
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No. They said I can renew the Hardship Program annually, so I will be doing that in July. I was really surprised that they agreed to give me 3 pills a day for free when my doctors prescribed a higher doseage for me. Did you ever apply for the program? You realize that you are letting your fear and your "what ifs?" hold you back right? You were going to buy the Xeljanz 3 months ago but changed your mind. All of this procrastination is holding your hair regrowth up. You need to operate in faith.
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Terrific! Welcome, and please keep us updated on your story. Share photos along the way, if you're not shy about it. Every story helps us understand things better!
--Susasn
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Hi--
I really don't know about your type of alopecia at all, so I can't offer you any info. If anyone else reading this knows something or can refer a doctor to call, please let us know!
P.S.) And I recommend you change your user name to "Hopeful in Chicago." We are all in a very different place than what was offered two years ago. New research is spinning along. Xeljanz is now prescribed by many doctors. People are healthy...There is SO much to be hopeful about!
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