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 Pela on
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One treatment about to enter clinical testing in Europe (France) is low-dose IL-2.
I have published discussion about it!
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I just got my prescription yesterday!! I am so excited to get my hair back, I currently have short little white hairs all over which never get any longer so I am hoping they will darken up and grow soon. All of your posts with success on this medication are so encouraging and helped me convince my doctor to give it to me, thank you all!
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Permalink Reply by Susan McAdams on
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I cannot wait to see your progress! Be patient--it can take a few months to see real results. For me, it was almost 4 months before I saw that first deal shadow on the top of my head that was the start of everything coming in. It took time for eyebrows and lashes. Probably closer to 5 months. But, you have every reason to be hopeful. The odds are in your favor. Just keep patient. And keep us all posted!
--Susan
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Thanks! This is week 6 vellus hairs are growing especially in unwanted areas, still waiting on some with pigment but I have a lot more of them now so I know it is doing something!
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Permalink Reply by Kristin on
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I'm curious about your remission. Did you experience Alopecia as a child or adolescent?
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Are you asking me, Kristin?
--Susan
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I did not have any kind of alopecia as a child, and I do not know of anyone in my family who had it. My first occurance was one 3-4" strip on the left side of my scalp back in mid 2005. But, that was already growing back by the time my hairdresser even noticed it. I was 36 at the time.
Then, in June 2007, I had a bad case of mercury poisoning (I had been eating a LOT of fish for several months while on a strict diet). I didn't realize I had the poisoning, but then my hair began to rapidly fall out. In a 6-week span I lost over half of my scalp hair (body hair was intact). After extensive tests, I fianlly got a comprehensive heavy metal test (not just a simple blood draw) and found that my mercury levels were sky high. I had other legitimate syptpms related to mercury as well. I went through chelation, but for whatever the reason, my hair spontaneously grew back quickly. I only wore a wig for a few months and then had long enough regrowth to put in hair extensions.
One year later (June 2008), I had an alopecia relapse. Not sure why. But lost about 1/3 of my hair then. I got by without a wig because the hair extensions covered most new spots, and again, the hair grew back on its own fairly quickly.
So, from about October 2008 until December 20012, I was basically in remission. I think I had one or two small spots in that 4-year stretch, but nothing major, and any hair loss grew back quickly. I did not do anything radical to my health regimen during that remission--maybe took some Biotin for awhile. I was very careful to avoid high mercury fish, but did resume eating fish that are considered "safe" on the EPA list.
Jump ahead to Nov-Dec 2012. I had gone thru a divorce--stressful but not horrible. About as amicable as two can be and only did mediation. I was madly in love with a new man from my community who was also in the process of splitting with his wife. But, he put me through emotional hell--a total rollercoaster ride--lied about promises, was a narcissist, and my mercury levels crept up again because we were eating a lot of fish because of his health fanaticism. I learned after-the-fact that I am hyper-sensitive to ANY amounts of mercury, and also learned that seemingly small "safe" fish can be problems if coming from polluted waters (e.g. snapper from the Gulf of Mexico). So, during the holidays of 2012, I walked into what you would call "The Perfect Storm." Hit on all fronts emotionally and physically. And that's when the alopecia relapse started. And just kept going. Slowly, for all of 2013, until I had to shave my head in December 2013. It never grew back. And then 6 months later, I progressed into AU. Not one bit of regrowth until I went on Xeljanz in February 2015 in the Stanford trial--and I did not have any progress until mid-April. 3 1/2 months until I noticed new growth.
I did not write this mini-novel here to unload my personal dramas for all to see. I am making 3 major points here:
1. This is a very unpredictable disease. As are all autoimmune diseases. Yet, if alopecia develops in adulthood, it was likely due to a genetic mutation, as opposed to carrying the gene at birth (and developing the disease in childhood). And as with most autoimmune diseases, some "stressor" to the body--be it a virus, another illness, physical or emotional trauma...sets of the mutation. The reason doctors just throw up their hands when we try to learn what that "stressor" may have been is because there are SO many life variables! Yet, I firmly believe the severe mercury poisoning in 2007 was my stressor. I lokely had some poisoning back in 2005 because I ate a lot of fish that spring as well. The timing for the attacks were very closely correlated.
2. One MAJOR advantage we alopecians have over those with other autoimmune diseases is the ability to spontaneously go into remission. It happened with me 3 times with no major changes other than getting the mercury out of my body through chelation. With most other autoimmune diseases, you are pretty-much hosed. Once you get it, it doesn't go away on its own. You MUST rely on JAK's. Yet, for those of us who had childhood alopecia or had the disease progress into AU (as in my case), the odds of spontaneous remission are very, very low. Going on a JAK (Xeljanz) became necessary.
3. And I cannot stress strongly enough the importance of reducing stress in one's life if an autoimmune disease is present. I have seen ZERO evidence that strict diet changes, vitamin supplements, acupuncture, Cortisone shots, etc...do anything but minimal, temporary help. Look at all the posts by folks here on Alopecia World who went totally gluten/dairy free, became vegans, invested thousands in vitamins and herbal remedies, and the most progress they could claim were some new vellus hairs or a few patches of dark regrowth. But I do not know of one alopecian who went into total remission through these methods. And how do you not know any of the progress was just "spontaneous?" Like I said, I had FULL spontaneous regrowth 3 times with no major lifestyle changes except for chelation.
I will make a post later today about STRESS. I have a story to share that I hope will benefit others. This post is already long enough! Hope it answers some questions for you.
--Susan
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Permalink Reply by Niece on
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I believe stress is what prompts this disease to move forward. Wish I knew how to NOT stress. So excited for the clinical trails to happen and help for those of us with AU. It would change my life if my hair grew back. I am coping ..but it is not easy for me!
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Permalink Reply by Rach1992 on
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Hey all! I'm glad to see so many of you updating this and as time goes on, we learn more about these treatments. Do you guys have any updates or know anything about how long the cream trial for the JAK inhibitor Dr. King will take to finish? I know the research started in about December 2015 but I can't wait for the results. 7 months has felt like a lifetime! hehe
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hi .
when you use Xeljanz have feel your peel skin head fall down
my first month when I used Xeljanz I feel my head skin like rough, then when I took a shower then I comb my hair I saw peel every where down after third month the hair grows that why I realize maybe Xeljanz make a new peel in skin that grow hair, do you have any experience about skin peel when you use Xeljanz ?
pleas I want eveybody answer that good for us
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Hi Sultan--
I can't speak for others, but I did not have any peeling on my scalp or anywhere else. If anyone else had a different experience, please respond. I think we all respond differently to the medication.
--Susan
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