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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 Xeljanz2015 on
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Hi Sadele I just accepted it and sent you a message.
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Permalink Reply by sadele on
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Hi Susan,
I emailed Dr. King about my progressive shedding and he said that Xeljanz works, although "it is incomplete". I really don't like to profess this, but I am in a very, very stressful marriage. In the depths of my heart I think it is the catalyst of my Alopecia. And unfortunately there are bad days mixed in with the good... but I am an incredibly sensitive person and the daily things that happen really get to me. I actually feel my blood prickle through my veins, which I know is a result of being in a high-conflict situation. It's a physical feeling I have and I think my body just found a way to deal with it (attacking my hair). Things have been better, but something happened in February that crushed me...and it still runs through my mind which is not good for my well being. So perhaps my shedding is a result of that... I'm not sure.
What I do know, is that like you, I am very healthy...Running, yoga, prayer, passionate about my career, grateful for my healthy daughter and naturally a peaceful person. And I believe that my future does not include Alopecia. Or hair loss for that matter.
I got a bit obsessed with supplements as well, so maybe this is something to the shedding... again, I don't know... that's the frustrating part, I just don't know. I would say I'm pretty intelligent and sensible, so the "not knowing" is a constant battle.
Everyday that I drive to work I listen to an uplifting podcast and think to myself, "today will be the beginning of a new chapter in my life", and it's that thinking that gets me through the 24 hours. I'm not going to lie, it sucks to lose beautiful hair, lashes and eyebrows... it SUCKS. Nothing has sucked more than this. But I still have hope that with inner strength I will preserver.. I will get my marriage back and I will get my hair back. Damit.
This was probably an unnecessary post, but I actually feel a bit lighter.. so thank you for not judging and for having an understanding that most don't have.
Serina
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Hi everyone I want to share my story. In my 20's and 30's I had so many extremely stressful situations I look back now and think how did I ever cope.For example I found my youngest daughter 2 weeks old dark blue and not breathing after weeks in intensive care we finally were able to bring her home.My husband had a job in a big studio were drug use was out of control it took several years to beat the addiction.My parents stopped talking to me when all this was going down and never knew their grandchildren.It just went on and on and through it all I also had my beautiful long hair. It wasn't until 20 years later when I developed a thyroid problem and about 3 years later the hair started falling out.Thyroid problems run in the family and I don't know of anyone else getting Alopecia.This disease is such a mystery.Since I increased my dosage and added plaquenil 2 months ago I have light arm hair and leg hair(should almost shave it but I want to keep track of it)still have about 30 per cent of my scalp hair hope that starts taking off.I was very lucky kept about 60 percent of my eyebrows and all my eyelashes nose hairs.I sure hope one day I can go without a wig.Went to Vegas last week and it was 114 outside not pleasant with a wig on your head.No one who doesn't have this disease can truly understand how devastating it is.My insurance company didn't want to reimburse we for my last Dostor bill because they said they don't cover hair loss.Tried to explain this is an autoimmune disease they just don't get.Enought rambling good luck to everyone!
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Permalink Reply by Jcortez05 on
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Football fan Do you have RA? Sorry if you mentioned that and I missed it .. My dr just prescribed that to me . I also had very very stressful situations and surgery also . .. I totally get the wig and heat also ! Use to love summer but not anymore :-/
Good luck !!
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No RA just thyroid condition.
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It seems Xeljanz works better in men tha women. And probably that is why women seems to face a relaps:
http://link.videoplatform.limelight.com/media/?mediaId=10c8422215d0...
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Permalink Reply by Susan McAdams on
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Yay! Fingers crossed, and keep us all updated!
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Permalink Reply by Jalex4109 on
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Thank you I heard bad from docter but never from someone on it so we will see how it goes will update on blood work everymonth
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I just wanted to add...I feel really touched by people's posts over the past couple days--sharing hard personal stories that demonstrate how stress can really affect the body. It is not easy to tell these tales with virtual strangers. But, the support we all have for one another--even if we have never met--is a real gift. I know if we all had a choice, we would wish we never had to be here and were instead living life without this disease. But, it sure feels good to know we are not alone and that so many of our stories overlap in similar ways. I am grateful for the support I have found here, and I hope this discussion page continues to not only be informative, but serve as a platform for us all to offer sound advice, hope, and wishes for well-being!
--Susan
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We all have the same condition so we all know each other's struggles and pains. we all unite as a family I speak to people I see on the street to give some advice to make them feel better about them selfs. We're all a family and it's good to have others to speak and talk to about it #alopeciawarriors lol
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