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 raffaella saccardo on
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Do anybody know if there is a relation between gluten and alopecia ? Could a gluten free diet helps the remission of alopecia ?
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I asked the question to a few specialists. They all answered the same thing. If you are celiac then yes gluten may have a very bad influence. But if you are not celiac, studies have shown that gluten free diet does not have any impact
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Thank you very much for Yr reply. My daugther is 24 years old and she's independent., We don't know if she is celiac or gluten intollerant but now she decides to try the gluten free diet.
If - maybe - she will note any result, I will immediately write here.
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Permalink Reply by Xeljanzmiracle on
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Rafaella, gluten is a protein in WHEAT, rye or barley that causes some people to have celiac disease. The body attacks the small intestine causing cramping, discomfort and other intestinal issues which lead to malnutrition. However, a person, like me, can also be intolerant to gluten without having celiac disease. In my case, gluten gives me asthmatic symtoms causing me to cough excessively (bring up phlem) to get rid of it. My system was so damaged at one point, I was allergic to scented lotions, perfumes, and strong cleaning products, etc. Once I stopped eating it, I was able to stop using inhalers and having severe allergic reactions. During the worst of my attacks, back in 2009, my hair started falling out. I do believe my hairloss was gluten related, because when I changed my diet, and restricted ALL CARBS, some of my hair grew back. But at the time, I didn't know I was allergic to gluten. Personally I knew that I would never be able to stay off of gluten (especially wheat) completely for my hair to grow back, so thank goodness for Xeljanz! Picture 1, hair filling in front and back in mirror. Picture 2, regrowth of eyelashes.
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Thank you very much for sharing your experience.
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Permalink Reply by Susan McAdams on
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Rafaella,
Please look through the dozens of other posts related to diet on Alopecia World (AND on Google) and sadly, you will not find any hard evidence in any medical journal that shows a correlation between diet and alopecia. I have talked extensively with half a dozen M.D.'s in Los Angeles (dermatologists, endocrinologists, rheumatologists, dietitians, etc.) as well as my doctors at Stanford, and no one can find any pure evidence.
I myself, went gluten-free and dairy-free last year for several months and saw zero improvement. My hair didn't grow back until I was on Xeljanz for 3+ months.
There are folks on this website who swear by a few books written by doctors related to diet and autoimmune disease. Some claim to see some faint hairs returning. However, no one has come forward claiming their strict diets put their alopecia into remission. The way I see it with these books is, they bring in income for the authors who wrote them. In other words: Book Claims=$$$=No Hard Evidence. I would love to believe the claims are true. But where are the real, observable results?!
With that said, there is nothing wrong with a gluten-free diet. But it requires a lot of discipline. If it makes one feel better, then go for it! But don't get your hopes up. If anyone reading this can point us to hard evidence supporting a gluten-free diet to cure alopecia, please show us the links. As far as book claims go, I just don't buy it.
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I have had alopecia for thirty years. Gene specialists will tell you that no gene structure which is responsible for human cell growth is perfect for each person. Those of us with alopecia probably have auto immune deficits in our genomes.
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Rafaella, I gave you my personal experience with gluten and my hairloss on another reply. There is a woman named Sheree who started a blog and newsletter called "Healthy Diet Paradise". She tells her personal story of remission by changing her diet to omit gluten and features the personal stories (and pictures) of others who claim to have regrown their hair following her diet. She was recently invited by Dr. Oz to appear on his show. Check her website out.
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Ok. Many thanks. I'll look for the blog. Thank you very much again
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Permalink Reply by 3ebdie on
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How much was the jakavi per month and on what dosage was your daughter?
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After reading what Susan wrote on wednesday, I don't know if I can reply. Anyway, this would be the last time that I write something that is not related to Xeljanz.
Price of Jakavi in Croatia is € 4850/box (one month therapy). She took 2 pills/day of Jakavi 20 mg. for 5 months.
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Its ok Raffaella, just reply on ADML's discussion from now on or mine entitled "From Totally Bald to Regrowth in One Month!". Even though ADML started the thread talking about his trial on Xeljanz, in general he doesn't try to control what other people talk about. Xeljanz and other JAK 3 inhibitors are related and we all have different backgrounds and health issues that affect us, so its understandable to go off topic sometimes. We have all been affected by Alopecia (you thru your daughter) and we just want to talk to others that can relate to us that are sympathetic.
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