All Discussions Tagged 'alopecia' - Alopecia World2024-03-28T17:05:18Zhttps://alopeciaworld.com/forum/topic/listForTag?tag=alopecia&feed=yes&xn_auth=noI want info and general advicetag:alopeciaworld.com,2023-02-05:2022678:Topic:19678272023-02-05T18:55:19.443ZNany Queenhttps://alopeciaworld.com/profile/NanyQueen
<p>Hello, I've heard there is a lady with a program called Alopecia Angel, and it seems to have legit reviews. But, i'd like to hear from any of you here, if you know someone or if you've ever tried her program? I'm thinking about joining it. I just want to be 100% sure. </p>
<p>Hello, I've heard there is a lady with a program called Alopecia Angel, and it seems to have legit reviews. But, i'd like to hear from any of you here, if you know someone or if you've ever tried her program? I'm thinking about joining it. I just want to be 100% sure. </p> .tag:alopeciaworld.com,2022-12-31:2022678:Topic:19668602022-12-31T21:13:51.222ZThiscrazyjourneyhttps://alopeciaworld.com/profile/Thiscrazyjourney
<p>.</p>
<p>.</p> OLUMIANT Alopecia Community Watch – The Good, The Bad and The Ugly!tag:alopeciaworld.com,2022-12-23:2022678:Topic:19663682022-12-23T21:55:50.813ZCheryl, Co-founderhttps://alopeciaworld.com/profile/cherylcarvery
<p><a href="https://storage.ning.com/topology/rest/1.0/file/get/10918596469?profile=original" rel="noopener" target="_blank"><img class="align-right" height="227" src="https://storage.ning.com/topology/rest/1.0/file/get/10918596469?profile=RESIZE_710x" width="227"></img></a> We have been hearing A LOT about the new FDA Approved Lilly and Incyte's OLUMIANT® (baricitinib) drug.</p>
<p><br></br> We would like to start a discussion here on Alopecia World with people who have tried it, are trying it, or considering trying it. This is a place you can discuss both success as well as side-effects and objections to trying the drug. Hoping…</p>
<p><a href="https://storage.ning.com/topology/rest/1.0/file/get/10918596469?profile=original" target="_blank" rel="noopener"><img src="https://storage.ning.com/topology/rest/1.0/file/get/10918596469?profile=RESIZE_710x" class="align-right" width="227" height="227"/></a>We have been hearing A LOT about the new FDA Approved Lilly and Incyte's OLUMIANT® (baricitinib) drug.</p>
<p><br/> We would like to start a discussion here on Alopecia World with people who have tried it, are trying it, or considering trying it. This is a place you can discuss both success as well as side-effects and objections to trying the drug. Hoping this form will help people with alopecia make more informed decisions.<br/> </p>
<p>A place that hopefully we can get real users’ comments and reactions. Maybe uncover some things that your doctor never told you about the drug, good or bad. Upload your photos, videos, anything you think the community should know about OLUMIANT®.</p>
<p> </p>
<p>Or perhaps you just want to keep your eye on OLUMIANT®, let this be the place.</p>
<p> </p>
<p><a href="https://alopeciaworld.com/group/oluminant-aloepecia-community-watch" target="_blank" rel="noopener">JOIN THE GROUP TODAY TO KEEP UP ON THE DISCUSSION</a></p>
<p> </p>
<p>According to Lilly, ” Eli Lilly and Company (NYSE: LLY) and Incyte (NASDAQ:INCY) announced<br/> that the U.S. Food and Drug Administration (FDA) has approved OLUMIANT® (baricitinib), a once-daily pill, as a first-in-disease systemic treatment for adults with severe alopecia areata (AA), available as 4-mg, 2-mg and 1-mg tablets.1 The recommended dose is OLUMIANT 2-mg/day, with an increase to 4-mg/day if treatment response is inadequate. For patients with nearly complete or complete scalp hair loss, with or without substantial eyelash or eyebrow hair loss, consider treating with 4-mg/day. Once an adequate response is achieved on 4-mg/day, the dosage is to be decreased to 2-mg/day.1 OLUMIANT is not recommended for use in combination with other JAK inhibitors, biologic immunomodulators, cyclosporine or other potent immunosuppressants.”</p>
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<p><a href="https://alopeciaworld.com/main/search/search?q=OLUMIANT" target="_blank" rel="noopener">More discussion on AlopeciaWorld.com regarding Olumiant</a></p> Alopecia sufferer rubbed onion on scalp in bid for hair growth - Crazy or try anything once?tag:alopeciaworld.com,2022-11-22:2022678:Topic:19650622022-11-22T06:21:23.956ZCheryl, Co-founderhttps://alopeciaworld.com/profile/cherylcarvery
<p style="text-align: center;"><a href="https://storage.ning.com/topology/rest/1.0/file/get/10889171277?profile=original" rel="noopener" target="_blank"><img class="align-left" src="https://storage.ning.com/topology/rest/1.0/file/get/10889171277?profile=RESIZE_710x" width="328"></img></a></p>
<p>"A <span>woman who lost her hair to alopecia and rubbed onion on it to try and grow it back reveals she's finally embraced her condition. Nikita Laing spent 14 years desperately trying every treatment to cure and hide her androgenic alopecia from friends."</span></p>
<p></p>
<p><span>"She said: "It was awful, I thought…</span></p>
<p style="text-align: center;"><a href="https://storage.ning.com/topology/rest/1.0/file/get/10889171277?profile=original" target="_blank" rel="noopener"><img src="https://storage.ning.com/topology/rest/1.0/file/get/10889171277?profile=RESIZE_710x" width="328" class="align-left"/></a></p>
<p>"A <span>woman who lost her hair to alopecia and rubbed onion on it to try and grow it back reveals she's finally embraced her condition. Nikita Laing spent 14 years desperately trying every treatment to cure and hide her androgenic alopecia from friends."</span></p>
<p></p>
<p><span>"She said: "It was awful, I thought Minoxidil would be the right option for me but when I went to the pharmacy, I was told it would cost me $300 per month. I was 17 with no job or money, so I went home and cried and cried."</span></p>
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<p><span>"As I couldn't get medical treatment, I tried lots of different natural remedies. I tried acupuncture, supplements, even mashing up roasted onion and rubbing it into my scalp - all of the disgusting things, I tried."</span></p>
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<p class="">"The condition would hold her personal life back and affected her relationships with friends and family. She said: "When Minoxidil didn't work, it was like I was grieving all over again. I thought about it every single day, I would plan my entire life around my hair schedule."</p>
<p class=""></p>
<p class="">"It stopped me from going swimming or camping with my friends and I went from a happy-go-lucky girl to this high maintenance person. For a long time, only my immediate family knew. I would tell my friends I didn't like coming out."</p>
<p class=""></p>
<p class=""><span>"Now aged 31, the midwife embraces her condition and encourages others to speak about hair loss."</span></p>
<p class=""></p>
<p class=""><span>"After years of hiding and trying all sorts of treatment, I finally feel good about it," she said. I've reached a place that I'm really okay about it," she said."</span></p>
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<p><strong>Did she do too much </strong><strong>or is the embarrassment of hair loss worth more risk?</strong></p>
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<p>Source: <a href="https://www.msn.com/en-gb/health/familyhealth/alopecia-sufferer-who-rubbed-onion-on-scalp-in-bid-for-hair-growth-now-embraces-condition/ar-AA13UnD6" target="_blank" rel="noopener">MSN.com</a></p>
<p></p> Is This "The Cure" We've All Been Waiting For?tag:alopeciaworld.com,2022-08-30:2022678:Topic:19612052022-08-30T02:57:21.558ZAlopecia Worldhttps://alopeciaworld.com/profile/alopeciaworld
<p><span style="font-size: 18pt;"><strong>The Key to Locks: Columbia Team’s Breakthrough Led to Hair Loss Treatment</strong></span></p>
<p><span style="font-size: 12pt;">By Alan Dove</span></p>
<p><span style="font-size: 12pt;">For over a decade, Columbia geneticist Angela Christiano, PhD, has attended the annual meeting of the National Alopecia Areata Foundation, where hundreds of individuals affected by the hair loss disorder gather to support one another and learn about the latest scientific…</span></p>
<p><span style="font-size: 18pt;"><strong>The Key to Locks: Columbia Team’s Breakthrough Led to Hair Loss Treatment</strong></span></p>
<p><span style="font-size: 12pt;">By Alan Dove</span></p>
<p><span style="font-size: 12pt;">For over a decade, Columbia geneticist Angela Christiano, PhD, has attended the annual meeting of the National Alopecia Areata Foundation, where hundreds of individuals affected by the hair loss disorder gather to support one another and learn about the latest scientific research. The meeting is a safe space where patients with alopecia, many of whom have lost all their hair, joyfully remove their wigs and head coverings for the three-day celebration, without fear of shame or judgment.</span></p>
<p><span style="font-size: 12pt;">But this year’s meeting was a bit different. Christiano had trouble recognizing conference attendees she’s known and worked with for years, because many of them now have full heads of hair.</span></p>
<p><span style="font-size: 12pt;">For people with alopecia areata, an autoimmune disease that can cause hair loss so complete that people even lose their eyebrows, the change in appearance was dramatic.</span></p>
<p><span style="font-size: 12pt;">It was also a direct result of Christiano’s groundbreaking research on the condition, which led the FDA in June to approve(link is external and opens in a new window) the first systemic treatment specifically developed for severe alopecia areata.</span></p>
<p><span style="font-size: 12pt;">“It’s a strange feeling. It’s what every geneticist dreams of, to find the genes for a condition and develop a treatment that can directly benefit patients. But it’s extremely rare that it actually works out that way,” says Christiano, who has studied alopecia areata for more than 20 years, motivated by her own bout with the disease.</span></p>
<p><span style="font-size: 12pt;"><a href="https://www.cuimc.columbia.edu/news/key-locks-columbia-teams-breakthrough-led-hair-loss-treatment" target="_blank" rel="noopener"><strong>Click here to continue reading...</strong></a></span></p>
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<center><iframe src="https://www.youtube.com/embed/01woTEx3gqI?wmode=opaque" allowfullscreen="" width="560" height="315" frameborder="0"></iframe>
</center> Research on Pfizer Vaccine and the Immune Systemtag:alopeciaworld.com,2021-06-05:2022678:Topic:19451392021-06-05T06:54:42.958ZBaldiehttps://alopeciaworld.com/profile/Baldie
<p>I came across this medical research that has NOT been peer reviewed, from scientists in Germany and the Netherlands. They studied the Pfizer COVID vaccine and found that it reprograms innate immune system responses to a whole host of stimuli from fungi to viral infections to bacteria. Changing how we react to things that go well beyond just COVID.</p>
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<p>The Pfizer vaccine potentially permanently alters the immune system in ways that are not fully understood. The research shows…</p>
<p>I came across this medical research that has NOT been peer reviewed, from scientists in Germany and the Netherlands. They studied the Pfizer COVID vaccine and found that it reprograms innate immune system responses to a whole host of stimuli from fungi to viral infections to bacteria. Changing how we react to things that go well beyond just COVID.</p>
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<p>The Pfizer vaccine potentially permanently alters the immune system in ways that are not fully understood. The research shows the anti-inflammatory response to stimuli was reduced. That's a double negative equalling increased systemic inflammation. And systemic inflammation is the root cause of Alopecia!!</p>
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<p>I'm trying to tamp down my immune system so it stops attacking my hair follicles. The COVID vaccine seems to work contrary to this goal, at least in this research. </p>
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<p><a href="https://www.news-medical.net/news/20210510/Research-suggests-Pfizer-BioNTech-COVID-19-vaccine-reprograms-innate-immune-responses.aspx#commentblock" target="_blank" rel="noopener">Research suggests Pfizer-BioNTech COVID-19 vaccine reprograms innate immune responses</a></p> My experience with Ruxolitinibtag:alopeciaworld.com,2020-10-13:2022678:Topic:19331062020-10-13T22:01:57.196ZJadehttps://alopeciaworld.com/profile/Jade68
<p>I'm 39 and have had patches of AA since 12. I've been able to manage it pretty well with topical clobetasol throughout my life until recently 38 y/o I had a stressful event and it all fell out and first time experiencing AU. I began a trial with concert pharm last Jan 2019 taking the experimental <span>deuteriated </span>version of ruxolitinib at 12mg bid. I had rapid hair growth with first white vellus all over within the first month then 95% terminal hair growth by Aug. …</p>
<p>I'm 39 and have had patches of AA since 12. I've been able to manage it pretty well with topical clobetasol throughout my life until recently 38 y/o I had a stressful event and it all fell out and first time experiencing AU. I began a trial with concert pharm last Jan 2019 taking the experimental <span>deuteriated </span>version of ruxolitinib at 12mg bid. I had rapid hair growth with first white vellus all over within the first month then 95% terminal hair growth by Aug. </p>
<p></p>
<p>I had a separate medical procedure in Oct that required me to be off of the ruxo. I immediately experienced full body inflammation. I had ezcema prior but never to this extreme and never on my face. My upper eyelids were red and under eyelids were dry and wrinkly and general splotchiness all over my face and extreme itchiness on my scalp and body. This medical procedure was quite taxing on my body which required freq blood draws and hormones and I figured it was the combination of withdrawing from ruxo and all these new things i was doing to my body. My hair maintained for the most part with some of the previous 5% non growth areas (mostly temples) falling out. But by Dec, I had some rapid hair loss about 50% gone. I returned to full dose of 12mg bid at this time, my skin cleared up within a few days. It took 4 months (April) for my hair to start to return and by Aug again, this time I had 100% of my hair. </p>
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<p>Starting Jan 2020, I had a few extreme infections including a couple occasions of styes, herpes (I've previous had experiences with it but never this bad, it is a known side effect of being on this medication to be prone to more infections. I've also had more headaches than i've ever had since beginning this medications. The headaches were quite mild so not too bad just annoying. The infections were more concerning. Recently, I had another stye and extreme dehydration, I was really concerned so I interrupted the medication. Immediately again my whole body but mostly my face and scalp became inflammed. This time my entire face is red with swollen lymph node on one side. I consulted the Dr about this and he basically prescribed a topical and told me to get back onto the medication in order to reduce the inflammation. </p>
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<p>I am quite discouraged by all of this. On the one hand, I have a full head of hair and very happy about that. But now my face is all red, dry and my head feels like its on fire. I was previously ashamed of being bald, but now i can't even show my face to the world with this full head of hair. I wish there was a solution to this. I'm wondering if anyone else has had this adverse withdrawal experience with a jak inhibitor? I'm not sure the trade off is worth it. What I'm understanding is that this drug will help your hair grow but then once you're on it, you're stuck forever (with the terrible side effects) or else your face will fall off and later your hair. I would love to hear a better experience if any of you care to share? Thanks for reading. </p> What is it like living with Alopecia?tag:alopeciaworld.com,2020-03-25:2022678:Topic:17379842020-03-25T02:55:31.290ZGabehttps://alopeciaworld.com/profile/Cheltenham
<p>I own the lifestyle brand <a href="https://www.cheltenhamave.com/about" rel="noopener" target="_blank">Cheltenham Ave</a> centered around living well with alopecia. (Titled after the street I lived on when I was diagnosed.) One of the most popular questions I see is "What is it like living with alopecia". If anyone is interested please reply to this post and I will use your reply in the blog post I'm creating. Think Buzzfeed style - with your reply and an image or gif.</p>
<p>If you'd like…</p>
<p>I own the lifestyle brand <a href="https://www.cheltenhamave.com/about" target="_blank" rel="noopener">Cheltenham Ave</a> centered around living well with alopecia. (Titled after the street I lived on when I was diagnosed.) One of the most popular questions I see is "What is it like living with alopecia". If anyone is interested please reply to this post and I will use your reply in the blog post I'm creating. Think Buzzfeed style - with your reply and an image or gif.</p>
<p>If you'd like to be a part of changing the narrative from "suffering with" alopecia to "living well with" alopecia reply with:</p>
<p></p>
<p>1. Your answer to the question " what is it like living with alopecia?" </p>
<p>2. Current Age</p>
<p>3. Type of alopecia you have </p>
<p>4. First name </p>
<p>5. optional: social media handle (Twitter, Instagram, blog site, etc.) </p>
<p></p>
<p><strong>Example: Living with alopecia has been a journey of self-love and finding the perfect lightweight beanie. - Gabe, (26) Alopecia Areata, <a href="https://www.instagram.com/beanie_og/" target="_blank" rel="noopener">@beanie_og</a></strong></p>
<p><strong>Example: Living with alopecia is a 0 min morning hair routine.</strong></p>
<p><strong> </strong></p>
<p>Thank you!</p>
<p>(By replying to this you're allowing me permission to post.)</p> Alopecia/Hair Loss caused by Topamaxtag:alopeciaworld.com,2020-01-15:2022678:Topic:16768492020-01-15T04:23:03.282Zdnp224https://alopeciaworld.com/profile/dnp224
<p>Hi,</p>
<p></p>
<p>I recently tried Xeljanz for my diffuse alopecia, but it did not work for me and my doctor told me to stop using it. My next step is to go off my Topamax medication. 've been on topamax for approximately 12 years (for chronic headaches). Has anyone on here experienced hair loss from topamax? When I searched online I saw 100s of posts/articles on the issue. But was hoping to talk to someone about similar experiences.</p>
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<p>Thanks!</p>
<p>Hi,</p>
<p></p>
<p>I recently tried Xeljanz for my diffuse alopecia, but it did not work for me and my doctor told me to stop using it. My next step is to go off my Topamax medication. 've been on topamax for approximately 12 years (for chronic headaches). Has anyone on here experienced hair loss from topamax? When I searched online I saw 100s of posts/articles on the issue. But was hoping to talk to someone about similar experiences.</p>
<p></p>
<p>Thanks!</p> Has anyone tried Cepharanthine, an approved medicine from Japan for alopecia?tag:alopeciaworld.com,2020-01-13:2022678:Topic:16748542020-01-13T08:43:27.661ZMarcia7854https://alopeciaworld.com/profile/Marcia7854
<p>Hi Everyone,</p>
<p>Has anyone heard of or better yet tried Cepharanthine to treat their hair loss? I've been reading a lot about Cepharanthine lately and it seems to be very popular in Japan but most people outside of Japan have not heard of it. Its approved by the Japanese ministry of health to treat alopecia. </p>
<p>It's available to order online without needing a prescription and it looks really good, but I just wanted to see if anyone has had any firsthand experience with…</p>
<p>Hi Everyone,</p>
<p>Has anyone heard of or better yet tried Cepharanthine to treat their hair loss? I've been reading a lot about Cepharanthine lately and it seems to be very popular in Japan but most people outside of Japan have not heard of it. Its approved by the Japanese ministry of health to treat alopecia. </p>
<p>It's available to order online without needing a prescription and it looks really good, but I just wanted to see if anyone has had any firsthand experience with it?</p>
<p></p>
<p>Please let me know :)</p>