{"id":11979,"date":"2023-04-25T15:19:21","date_gmt":"2023-04-25T15:19:21","guid":{"rendered":"https:\/\/www.itsan.org\/us\/?p=11979"},"modified":"2025-08-14T14:22:28","modified_gmt":"2025-08-14T14:22:28","slug":"alicias-story-five-months-topical-steroid-withdrawal","status":"publish","type":"post","link":"https:\/\/www.itsan.org\/us\/2023\/04\/25\/alicias-story-five-months-topical-steroid-withdrawal\/","title":{"rendered":"Alicia\u2019s Story \u2013 Five Months Topical Steroid Withdrawal"},"content":{"rendered":"\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf\">\n.flex_column.av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf{\nborder-radius:0px 0px 0px 0px;\npadding:0px 0px 0px 0px;\n}\n<\/style>\n<div  class='flex_column av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf av_one_full  avia-builder-el-0  el_before_av_one_full  avia-builder-el-first  first flex_column_div av-zero-column-padding  '     ><style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_heading-01dc559f739296c44d50ee54400c77d7\">\n#top .av-special-heading.av-av_heading-01dc559f739296c44d50ee54400c77d7{\npadding-bottom:10px;\n}\nbody .av-special-heading.av-av_heading-01dc559f739296c44d50ee54400c77d7 .av-special-heading-tag .heading-char{\nfont-size:25px;\n}\n.av-special-heading.av-av_heading-01dc559f739296c44d50ee54400c77d7 .av-subheading{\nfont-size:15px;\n}\n<\/style>\n<div  class='av-special-heading av-av_heading-01dc559f739296c44d50ee54400c77d7 av-special-heading-h3  avia-builder-el-1  avia-builder-el-no-sibling '><h3 class='av-special-heading-tag'  itemprop=\"headline\"  >Alicia\u2019s Story \u2013 Five Months Topical Steroid Withdrawal<\/h3><div class=\"special-heading-border\"><div class=\"special-heading-inner-border\"><\/div><\/div><\/div><\/div>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf\">\n.flex_column.av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf{\nborder-radius:0px 0px 0px 0px;\npadding:0px 0px 0px 0px;\n}\n<\/style>\n<div  class='flex_column av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf av_one_full  avia-builder-el-2  el_after_av_one_full  el_before_av_one_full  first flex_column_div av-zero-column-padding  column-top-margin'     ><section  class='av_textblock_section av-av_textblock-2de302bf1aa3cf4c9157dbe6f50ac7eb '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" itemprop=\"blogPost\" ><div class='avia_textblock'  itemprop=\"text\" ><p><img loading=\"lazy\" decoding=\"async\" class=\"alignleft wp-image-11989 size-large\" src=\"https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2023\/04\/Screen-Shot-2023-04-24-at-6.43.22-PM-1030x349.png\" alt=\"\" width=\"1030\" height=\"349\" srcset=\"https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2023\/04\/Screen-Shot-2023-04-24-at-6.43.22-PM-1030x349.png 1030w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2023\/04\/Screen-Shot-2023-04-24-at-6.43.22-PM-300x102.png 300w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2023\/04\/Screen-Shot-2023-04-24-at-6.43.22-PM-768x260.png 768w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2023\/04\/Screen-Shot-2023-04-24-at-6.43.22-PM-1536x521.png 1536w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2023\/04\/Screen-Shot-2023-04-24-at-6.43.22-PM-2048x695.png 2048w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2023\/04\/Screen-Shot-2023-04-24-at-6.43.22-PM-1500x509.png 1500w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2023\/04\/Screen-Shot-2023-04-24-at-6.43.22-PM-705x239.png 705w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2023\/04\/Screen-Shot-2023-04-24-at-6.43.22-PM-450x153.png 450w\" sizes=\"auto, (max-width: 1030px) 100vw, 1030px\" \/><\/p>\n<\/div><\/section><\/div>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf\">\n.flex_column.av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf{\nborder-radius:0px 0px 0px 0px;\npadding:0px 0px 0px 0px;\n}\n<\/style>\n<div  class='flex_column av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf av_one_full  avia-builder-el-4  el_after_av_one_full  el_before_av_one_full  first flex_column_div av-zero-column-padding  column-top-margin'     ><section  class='av_textblock_section av-av_textblock-2de302bf1aa3cf4c9157dbe6f50ac7eb '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" itemprop=\"blogPost\" ><div class='avia_textblock'  itemprop=\"text\" ><p><span style=\"font-weight: 400;\">One snowy morning in 2022, I woke up with a swollen, red, burning face, tingling all over my body, and nausea. As someone with lifelong eczema and allergies, unexplained rashes were nothing new to me, but the systemic symptoms gave me pause. I called a local dermatologist and due to snow closures, I had a phone consultation. He diagnosed me with contact dermatitis and prescribed topical and oral steroids. Within 24 hours of taking the first dose of prednisone, my symptoms subsided. As a 25 year user of topical steroids for eczema, with long and short courses of oral steroids here and there, I considered them miracle drugs&#8211;this was no exception.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">After I finished the course of steroids, the rash came back, so I had a patch test to determine my triggers. A patch test is where a dermatologist or allergist places common cosmetic ingredients on a patient\u2019s back for four to five days to see what they react to. The test confirmed the immunosuppressant and topical steroids I had been using for years contained ingredients I was sensitive to: propylene glycol and <\/span><span style=\"font-weight: 400;\">dimethylaminopropylamine <\/span><span style=\"font-weight: 400;\">(DMAPA).<\/span><\/p>\n<p><span style=\"font-weight: 400;\">My partner and I spent hours clearing the house of anything that contained these two chemicals &#8211; shampoos, conditioners, soaps, lotions, medications, and even certain foods were donated or tossed. I spent too long at the grocery store checking the ingredients of every item I wanted to buy to ensure it wouldn\u2019t harm me. I started washing my hair with apple cider vinegar and washing my face with oatmeal.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Despite my efforts, my symptoms went from three to ten. <\/span><b>Every night before bed, my face, hands, and ears went bright red and felt like they were on fire.<\/b><span style=\"font-weight: 400;\"> My body broke out in unexplained hives and discoid eczema (one of the few subtypes of dermatitis I had never experienced before). <\/span><\/p>\n<\/div><\/section><\/div>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf\">\n.flex_column.av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf{\nborder-radius:0px 0px 0px 0px;\npadding:0px 0px 0px 0px;\n}\n<\/style>\n<div  class='flex_column av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf av_one_full  avia-builder-el-6  el_after_av_one_full  el_before_av_one_full  first flex_column_div av-zero-column-padding  column-top-margin'     ><section  class='av_textblock_section av-av_textblock-2de302bf1aa3cf4c9157dbe6f50ac7eb '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" itemprop=\"blogPost\" ><div class='avia_textblock'  itemprop=\"text\" ><p><img loading=\"lazy\" decoding=\"async\" class=\"alignleft wp-image-11991 size-large\" src=\"https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2023\/04\/Screen-Shot-2023-04-24-at-6.57.09-PM-1030x514.png\" alt=\"\" width=\"1030\" height=\"514\" srcset=\"https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2023\/04\/Screen-Shot-2023-04-24-at-6.57.09-PM-1030x514.png 1030w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2023\/04\/Screen-Shot-2023-04-24-at-6.57.09-PM-300x150.png 300w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2023\/04\/Screen-Shot-2023-04-24-at-6.57.09-PM-768x383.png 768w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2023\/04\/Screen-Shot-2023-04-24-at-6.57.09-PM-1536x766.png 1536w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2023\/04\/Screen-Shot-2023-04-24-at-6.57.09-PM-1500x748.png 1500w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2023\/04\/Screen-Shot-2023-04-24-at-6.57.09-PM-705x352.png 705w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2023\/04\/Screen-Shot-2023-04-24-at-6.57.09-PM-450x224.png 450w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2023\/04\/Screen-Shot-2023-04-24-at-6.57.09-PM.png 1704w\" sizes=\"auto, (max-width: 1030px) 100vw, 1030px\" \/><\/p>\n<\/div><\/section><\/div>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf\">\n.flex_column.av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf{\nborder-radius:0px 0px 0px 0px;\npadding:0px 0px 0px 0px;\n}\n<\/style>\n<div  class='flex_column av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf av_one_full  avia-builder-el-8  el_after_av_one_full  el_before_av_one_full  first flex_column_div av-zero-column-padding  column-top-margin'     ><section  class='av_textblock_section av-av_textblock-2de302bf1aa3cf4c9157dbe6f50ac7eb '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" itemprop=\"blogPost\" ><div class='avia_textblock'  itemprop=\"text\" ><p><span style=\"font-weight: 400;\">I began showing indications of circulation problems (mottled skin and Raynaud\u2019s). I was frightened \u2013 my symptoms were getting worse despite using the topical steroids as prescribed. I was told it was okay to keep using them until the rashes disappeared and I was flying through tubes of topical steroids. There was no red flag issued about the amount of refills I requested and, instead, I was prescribed a tub of more potent medication so the doctor did not have to keep calling the pharmacy. My dermatologist diagnosed me with seborrheic dermatitis and rosacea. He sent me off with a topical prescription to treat the rosacea. It made things even worse. I developed pustules all over my face, my hands and ears flushed redder and hotter, hives began showing up on my face and body, and my circulation problems continued to get worse. I\u2019d wake up with one limb numb even though it wasn\u2019t the limb I was sleeping on. I discontinued the rosacea treatment, but aside from the pustules on my face, every other symptom continued. Unfortunately, new and odder manifestations such as rashes that resembled acne on my neck, back, and arms also showed up.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Not getting the answers I needed, I decided to see an allergist. He sat at a big wooden desk, with a medical scribe by his side, and asked me to tell him my health story from birth to present. I took him through my history and relayed what had happened recently. He immediately recognized that something was wrong and assumed it was autoimmune. I was sent down the hall for skin prick allergy tests and 22 blood and urine tests to rule out everything from rare diseases to general inflammation.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Results from the skin prick allergy tests indicated environmental triggers included mold, dog, and just about every tree (the latter explained my yearly springtime suffering), and I began sublingual immunotherapy to treat my allergies. My lab results, on the other hand, came back normal, except for elevated IgE. Six months into spreading rashes on my face and upper body, numbness, tingling, and cycling red hot areas of the skin, I hit a breaking point. With ten doctors\u2019 appointments behind me, I was still sick, and I found myself bedridden on a beach vacation \u2013 nauseated, with bright red, burning circular patches on my cheeks.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">I called a dermatologist I used to see in New York City to make an appointment. A month later, in his office, I showed him ten photos of my face over the year and described my symptoms.<\/span><b> He immediately said, \u201cYou have Topical Steroid Addiction.\u201d <\/b><span style=\"font-weight: 400;\">Though I didn\u2019t know much about Topical Steroid Addiction and Topical Steroid Withdrawal, it was the first diagnosis I had in a year that made sense to me. He spent over 30 minutes with me, walking me through what I might expect and how I can treat the symptoms. \u201cWithdrawing will be horrible, but you will get better, and you will probably have beautiful skin when you are healed.\u201d\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Naturally, I did a lot of research when I got home. That\u2019s when I discovered ITSAN (The International Topical Steroid Awareness Network), and found out that for some patients, topical steroids, which were once a miracle for painful, itchy skin, eventually become less effective and patients describe developing new, spreading rashes. These worsening rashes are often mistaken for eczema, contact dermatitis, rosacea, or an allergic reaction.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">I became terrified of the uncertainty \u2013 of how long I might be bedridden, whether I\u2019d be able to keep working, and if I would feel disconnected from my body, partner, family, and friends. The day I went off the steroids, my face seemingly exploded. My eyes swelled and my entire face went bright red, like I was burning from the inside out. Within days, the red, scaly patches spread to my chest, my hands, and my arms. Then, my jawline began peeling and scabbing. This gave way to excessive exfoliation over my entire body \u2013 shedding so much skin I had to sweep up after myself.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">My worst symptom in those beginning months was the inability to regulate my temperature. I felt as if I had sun poisoning with burning, shivering, and night sweats. I began experiencing sleep disturbances and hair loss along with nerve pain and bone deep itch.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">I am at month five of TSW. I know they say healing is not linear, but some aspects of it have been for me. Each flare is shorter and less intense. My mental health has significantly improved. When I look at photos from the first month or two, I am shocked at how bad it was \u2013 as if I was out of body in the early days.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">I just returned from my first vacation and it was incredible! I ate whatever I wanted, wore jeans the entire time (if you know, you know), and did not flare once. It was incredible for my skin and my soul. Like most people during TSW, I have tried a lot of things to ease my suffering.\u00a0<\/span><\/p>\n<\/div><\/section><\/div>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf\">\n.flex_column.av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf{\nborder-radius:0px 0px 0px 0px;\npadding:0px 0px 0px 0px;\n}\n<\/style>\n<div  class='flex_column av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf av_one_full  avia-builder-el-10  el_after_av_one_full  el_before_av_one_full  first flex_column_div av-zero-column-padding  column-top-margin'     ><section  class='av_textblock_section av-av_textblock-2de302bf1aa3cf4c9157dbe6f50ac7eb '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" itemprop=\"blogPost\" ><div class='avia_textblock'  itemprop=\"text\" ><p><img loading=\"lazy\" decoding=\"async\" class=\"alignleft wp-image-11994 size-medium\" src=\"https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2023\/04\/image7-226x300.jpeg\" alt=\"\" width=\"226\" height=\"300\" srcset=\"https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2023\/04\/image7-226x300.jpeg 226w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2023\/04\/image7-450x596.jpeg 450w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2023\/04\/image7.jpeg 483w\" sizes=\"auto, (max-width: 226px) 100vw, 226px\" \/><\/p>\n<\/div><\/section><\/div>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf\">\n.flex_column.av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf{\nborder-radius:0px 0px 0px 0px;\npadding:0px 0px 0px 0px;\n}\n<\/style>\n<div  class='flex_column av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf av_one_full  avia-builder-el-12  el_after_av_one_full  el_before_av_hr  first flex_column_div av-zero-column-padding  column-top-margin'     ><section  class='av_textblock_section av-av_textblock-2de302bf1aa3cf4c9157dbe6f50ac7eb '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" itemprop=\"blogPost\" ><div class='avia_textblock'  itemprop=\"text\" ><h4><b>What has not helped me:<\/b><\/h4>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Acupuncture and Traditional Chinese Medicine (TCM)<\/b><span style=\"font-weight: 400;\"> &#8211;\u00a0 I tried this in the very early days and it led to flares. Many have had success, but it did not help me.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Low Dose Naltrexone (LDN)<\/b><span style=\"font-weight: 400;\"> &#8211; this was the most detrimental treatment I attempted. My night sweats became impossible to manage. Most significantly, I was unable to sleep for even a minute. My mind became so dark, I was unable to see the light. Within 24 hours of going off the medicine, I was able to sleep and find hope again.\u00a0<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Zinc Wraps<\/b><span style=\"font-weight: 400;\"> &#8211; man oh man did these make me flare!<\/span><\/li>\n<\/ul>\n<h4><b>What has helped me:\u00a0<\/b><\/h4>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Allergy patch testing, skin prick allergy tests and sublingual immunotherapy<\/b><span style=\"font-weight: 400;\"> in the year leading up to my diagnosis. Removing triggers prior to going through TSW has made it much easier for me to determine what is triggering me now (i.e., I now know it\u2019s not my shampoo, but the fireplace in a hotel room).<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Red light therapy and Doxycycline<\/b><span style=\"font-weight: 400;\"> &#8211; when my dermatologist diagnosed me, he recommended I take up red light therapy and he gave me a low dose of Doxycycline (an antibiotic) to help with inflammation over the first few months. Although antibiotics are controversial in the eczema community, and I am no longer on them, I credit this with my quick progress. A quality probiotic during this time was key.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Advil and Cannabis Chews<\/b><span style=\"font-weight: 400;\"> &#8211; both help me sleep. Advil helps with the itch\/inflammation on tougher days and cannabis chews help me sleep.\u00a0<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Modal fabric<\/b><span style=\"font-weight: 400;\"> &#8211; when I was diagnosed, I bought a bunch of comfy clothes, all made of modal fabric. I can\u2019t wait to never wear these clothes again, but they have been such a help.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Specific Supplements <\/b><span style=\"font-weight: 400;\">&#8211;<\/span> <span style=\"font-weight: 400;\">Vitamin D, Vitamin B, flax oil, and 500 mg of taurine. Taurine made my red sleeves dissipate within days!<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Dead Sea Salt, Coconut Oil Baths, Zinc Cream, Apple Cider Vinegar, Vaseline, Unpetroleum Jelly, and Castor Oil<\/b><span style=\"font-weight: 400;\"> &#8211; I\u2019ve used each of these items at various stages and in some stages, used nothing. If there is anything I have learned about products it\u2019s that we are all different. What helps one person may hurt another.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Protein and Bone Broth<\/b><span style=\"font-weight: 400;\"> &#8211; weight loss with TSW has been no joke, so adding in protein shakes has helped me to keep the weight on. In addition, eating more meat and bone broth has helped with skin healing and collagen. When I don\u2019t do these things, it is apparent pretty quickly.\u00a0<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Journaling<\/b><span style=\"font-weight: 400;\"> &#8211; journaling has become my friend during TSW. I make sure to write down a few things each day that I am grateful for, even if it is a hard day.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Mindset and Activity<\/b><span style=\"font-weight: 400;\"> &#8211;\u00a0 I am not saying some days won\u2019t be rough or that I don\u2019t allow myself to feel sad and tired from the marathon of this condition. However, it\u2019s important for me, personally, to remain hopeful each day. I exercise when I can and try to take daily walks, often in nature, which is always a great mental reset. A pedometer helps!<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Knowing my social media boundaries<\/b><span style=\"font-weight: 400;\"> &#8211;\u00a0 I did not have social media before TSW and spent a lot of time on the boards in the early days. I have gained a great support system and learned a lot from others. However, for me, the community can also create unnecessary confusion and anxiety at times. It can also make my entire identity feel wrapped up in TSW. Knowing when to deactivate my account or disengage has been important for my mental health.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Socializing <\/b><span style=\"font-weight: 400;\">&#8211; seeing friends and family, even when flared, is key. Getting out of the house helps me forget about my skin for a few hours and brings me joy.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Travel<\/b><span style=\"font-weight: 400;\"> &#8211; I was able to travel to California recently. I was anxious about how the flight, etc. would affect me and it ended up being the best thing I could have done for myself. The climate was great for my TSW, I spent almost no time thinking about my skin, I ate whatever I wanted, and did not experience one flare! The trip truly filled me up.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>The support of my partner, family, friends, doctor, and coworkers<\/b><span style=\"font-weight: 400;\"> &#8211; I am lucky to have an incredible support system \u2013 from my partner to my doctor to my job. Most people are not diagnosed with TSW and must diagnose themselves. I am not sure I could have done this without my doctor advising me to stay the course. I am certain I could not have done it without my partner\u2019s support \u2013 whether it has been taking me on a walk, providing kind reminders of how fast things change, or making me nourishing food.\u00a0<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Listening to my body <\/b><span style=\"font-weight: 400;\">&#8211; this has been my most important lesson so far. It\u2019s easy to get distracted by what works for other people. Listening to whether my body wanted a bath or a shower, needed rest, or something else has been critical. I stopped looking to others for what I should be trying and my skin thanked me by improving rapidly (so did my pocketbook).\u00a0<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">TSW has changed the way I think about my skin. I\u2019ve become more patient and I allow my body to heal on its own, rather than turning to a cream and\/or medicine right away. Despite the terrible symptoms, I am glad to know I am healing.\u00a0<\/span><\/p>\n<\/div><\/section><\/div>\n<div  class='hr av-av_hr-0ff602b3e980a3377077ff3c1c834df6 hr-default  avia-builder-el-14  el_after_av_one_full  el_before_av_one_full '><span class='hr-inner '><span class=\"hr-inner-style\"><\/span><\/span><\/div>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf\">\n.flex_column.av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf{\nborder-radius:0px 0px 0px 0px;\npadding:0px 0px 0px 0px;\n}\n<\/style>\n<div  class='flex_column av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf av_one_full  avia-builder-el-15  el_after_av_hr  avia-builder-el-last  first flex_column_div av-zero-column-padding  '     ><section  class='av_textblock_section av-av_textblock-2de302bf1aa3cf4c9157dbe6f50ac7eb '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" itemprop=\"blogPost\" ><div class='avia_textblock'  itemprop=\"text\" ><h4><b>Update &#8211; 6.5 months TSW\u00a0<\/b><\/h4>\n<p><span style=\"font-weight: 400;\">I\u2019ve sadly been going through a flare for the last four weeks. I believe it was triggered by a cold, but the truth is I may have flared either way. My skin is very painful this time around and is very elephant-y, so I\u2019ve cut back on showering\/bathing and have stopped moisturizing. Some of my least favorite TSW symptoms like thermoregulation issues, hair loss (pretty intense this time), and oozing have returned. My face and neck went into full flaking mode and I am back to vacuuming the bed.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">The ups and downs of this process can be really hard on a person\u2019s mental health. I won\u2019t pretend that some days I don\u2019t feel sorry for myself because I do and that is okay. On those days, I try to simplify and remember that no matter what I do (stay in the house or enjoy the pollen-filled air) I may flare. This pushes me outside of my anxiety and allows me to get out of the house when I can. Recently, I began making more to-do lists and even list what I can\u2019t do (i.e., I missed a work trip this week because I can\u2019t travel) and workarounds for that thing (i.e., I was able to dial in to the work event and my wonderful co-workers carried a laptop around with a camera on it so I could engage with the team face-to-face like I was there in real life).\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">I\u2019m finally beginning to see some improvements and softening of skin that was thickened for quite awhile. Although my neck is a hot spot for my TSW symptoms, I\u2019ve noticed a lot more elasticity there. I don\u2019t remember where I heard this, but I\u2019ve been reminding myself every day that if there are a finite number of flares I will go through in TSW, I am one flare closer to being healed. <\/span><b>We got this, fellow warriors (patients and caregivers alike)!<\/b><\/p>\n<\/div><\/section><\/div>\n","protected":false},"excerpt":{"rendered":"<p>&#8220;Though I didn\u2019t know much about Topical Steroid Addiction and Topical Steroid Withdrawal, it was the first diagnosis I had in a year that made sense to me.&#8221; -Alicia <\/p>\n","protected":false},"author":7,"featured_media":12013,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"give_campaign_id":0,"footnotes":""},"categories":[5],"tags":[],"class_list":["post-11979","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog"],"_links":{"self":[{"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/posts\/11979","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/users\/7"}],"replies":[{"embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/comments?post=11979"}],"version-history":[{"count":17,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/posts\/11979\/revisions"}],"predecessor-version":[{"id":12016,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/posts\/11979\/revisions\/12016"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/media\/12013"}],"wp:attachment":[{"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/media?parent=11979"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/categories?post=11979"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/tags?post=11979"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}