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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Dear Xeljanz Users who have or plan to REDUCE or CEASE taking their prior dosage:
It is CRUCIAL that you stay in touch on this site! On this discussion, if possible. What I am trying to explore with Dr. Ko, now is WHAT HAPPENS when we lower or stop the dosage that previously grew back our hair. Dosages have varied--some of us (myself included) got great regrowth on 5mg twice daily. Some need more. The important thing to examine, now, is what happens NEXT. There is so little data out there the longest any of us have been on Xeljanz is about 1 year. Thus, we need to gather data. We all need to know if anyone stops the drug but stays in remission. We also need to pinpoint a typical timeline for shedding when the drug is reduced or stopped. AND we need to see if those who had shedding continued to lose it all or were able to stop the process by going back to heir originally prescribed dosage.
Our biggest form of ammo, now is DATA. Without it, our doctors will not know what to do. So please, please, keep sharing your experiences on and off the drug!
--Susan
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Permalink Reply by Xeljanzmiracle on
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ADML has been on Xeljanz almost a year and a half. He started in August, 2014.
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I hope ADML will share his progress and whether or not he plans to reduce his dosage or not.
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Permalink Reply by Starshine on
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Great information, thanks Susan. I am approaching the one year mark also, started in March 2015. I currently have 90 percent regrowth and due to a slow start upped to 3 pills a day in August of 2015. Oddly, the pigment has not returned yet, still mostly pure white. Has anyone else encountered this? I would like to reduce down to 2 pills a day, but given the posts regarding shedding, I am scared to change anything until we get more info.
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Hey starshine that's great news mate ! Can I ask at what month did u start seeing growth ? Have you got eyebrows/ lashes and beard back ?? And have you tried anything with xeljanz ? Cheers in advance
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Awww that's fantastic star sunshine ! Sorry about the beard quote and I heard the pigmentation can take its time to restore.. If it's thick enough would you not think of dying it to your original colour ? Although first consult with your doctor about dyes etc. Thanks for the update gives us all hope :)
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Hi Singh, my growth started at 3 months, but really kicked in at 7. I do have full lashes and brows, but like my hair, they are lacking pigment. As I am female, no beard, thankfully. Most of my body hair has also returned, leg hair is coming in slower.
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Glad to hear, Starshine. As soon as I could ditch my wigs, I dyed the hair on my head because it was a ridiculous mix of brown, gray, and colorless. I was understandably nervous about using dye on my newly restored hair, but my dermatologist reminded me that alopecia is based at the cellular level, involving amino acids/proteins at the base of the hair follicle. What you do to your hair that is grown out has nothing to to with that process. Of course, I didn't want to damage the hair by going too extreme. But I dyed my whole head to match the brown that was coming in, then had the tips highlighted blonde. I love it, and I have been getting compliments from strangers who have no idea what I went through. I cannot tell you how great it feels to just look "normal" in a crowd, now.
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Thank you so much Susan. I have been wanting to dye it, but was afraid. I love yours and think I will highlight the tips also.
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Awesome, Starshine! You don't live in Los Angeles by any chance, do you? If you did, I'd give you my hairdresser's number. She is an amazing colorist. When I called her last month to give her the good news of my hair regrowth and ask her if she could highlight such short hair, she said, "I can highlight the hair on a rat's ass." LOL
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No, I live in Maryland, but I do have a great stylist also who has been waiting for my hair to grow back so hopefully she can do it like yours. Thanks again for all the great information. I agree we all need to keep each other informed. Knowledge is key with this disease.
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Make sure you post photos!
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