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 Xeljanzmiracle on
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Texas 2016, have you considered upping your doseage to 3 a day? When I did that, my hair growth really accelerated. I also started taking 10,000 mcgs of Biotin a few times a day and that helped a lot too. All my resistant bald spots filled in.
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Permalink Reply by Jcortez05 on
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I just shaved my head bc I was irked of watching it fall and thin out so much .. I'm trying to the AUtoimmune protocol diet and eliminating all inflammatory foods and stopping my xeljanz .. I will give another update in a month or so
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Permalink Reply by singh on
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Hey jcortez can I just ask why have you stopped taking your Xeljanz ? Did you experience full regrowth ?
Kind regards
Singh.
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I did get full regrowth but then had some anesthesia and 2 months later it started falling. Out .. Thinning . I could see a lot of my scalp so I just shaved it off . Didn't want to look at the hairs on my pillow anymore or in the tub when I showered. I'm going to try a diff approach. Going to try to heal my gut if I don't see results in a few months then I may go back on xeljanz not too sure as I don't want to be on medication for it all of my life .
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Permalink Reply by Zimrie on
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Would it be the stress of surgery or the anesthesia that has made people lose hair? If it's from anesthesia, then does one type cause hair loss more often than another?
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Jcortez05 and Jbuernojr, do you guys know what type or the NAME of the anesthesia both of you were given? Wouldn't it be interesting if it was the same kind? There may be a connection there. Ask your doctors/nurses. It should be in your charts.
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Jcortez05 I also had anesthesia end of May and I first noticed all the hair on my bathroom floor beginning of August.First two Doctors I went to said that happens all the time to people.Maybe that triggered my AA too.
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Hi football fan , yes some hair loss after anesthesia is normal but severe hair loss or complete hair loss isn't . I do also believe that is what started mine this time aroind and for my previous loss it was that in combination with the severe stress I was in
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Permalink Reply by DaveW on
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Interesting. Mine happened within months of getting general anesthesia for a tonsillectomy at age 7.
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