{"id":34397,"date":"2021-07-13T09:30:26","date_gmt":"2021-07-13T13:30:26","guid":{"rendered":"https:\/\/www.singlecare.com\/blog\/?p=34397"},"modified":"2024-03-26T14:12:07","modified_gmt":"2024-03-26T18:12:07","slug":"living-with-lupus","status":"publish","type":"post","link":"https:\/\/www.singlecare.com\/blog\/living-with-lupus\/","title":{"rendered":"Living with lupus: How I found a new normal after my diagnosis"},"content":{"rendered":"<p><span style=\"font-weight: 400;\">\u201cYou have lupus,\u201d the doctor said. I sat stunned that day in my rheumatologist\u2019s office. I knew nothing about the disease. Would my symptoms ever go away? Is there a cure? I didn\u2019t know the first thing about living with lupus\u2014or how to treat my pain.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">The only thing I knew was that my symptoms had affected every bit of my life. I couldn\u2019t walk up the two stairs to my front door without getting completely winded. My bones ached to no end. The fatigue was so bad that I passed up a fancy dinner out because the thought of chewing sounded like too much work.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">But after my diagnosis I had to learn not only what lupus was, but how to manage living with it.<\/span><\/p>\n<h2><span style=\"font-weight: 400;\">What is lupus?<\/span><\/h2>\n<p><a href=\"https:\/\/www.cdc.gov\/lupus\/index.htm\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">Lupus<\/span><\/a><span style=\"font-weight: 400;\"> is a chronic autoimmune disease where the immune system, which normally fights infection, fights the body\u2019s healthy tissues instead. Lupus can affect any part of the body, causing pain and inflammation. So, what does living with lupus feel like? Common lupus symptoms include:<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Extreme fatigue<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Pain or swelling in the joints<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Headaches<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Low fevers<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Sensitivity to sunlight<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Eye problems<\/span><\/li>\n<\/ul>\n<h2><span style=\"font-weight: 400;\">How is lupus diagnosed?<\/span><\/h2>\n<p><a href=\"https:\/\/www.lupus.org\/resources\/diagnosing-lupus-guide\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">Diagnosing lupus<\/span><\/a><span style=\"font-weight: 400;\"> is often a difficult and drawn-out process\u2014taking months to years to complete. Because there is no singular test to diagnose the disease, a healthcare provider will take your history, ask about symptoms, and conduct a variety of lab tests. Sometimes your provider may even refer you to an eye specialist as part of the diagnostic work-up. Because the diagnosis can be confounding, you may need to see a rheumatologist, a specialist who has received extra training in the diagnosis and management of musculoskeletal disease and systemic autoimmune conditions. If enough pieces of the puzzle indicate lupus, you may receive a diagnosis.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">I had symptoms, but it wasn\u2019t until several blood tests came back that I received my diagnosis. Still, I was in shock. Lupus was not on my radar\u2014and I am not alone in being caught off guard by my disease.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">\u201cIt is definitely normal to be surprised by a diagnosis of lupus,\u201d says<\/span> <a href=\"https:\/\/www.instagram.com\/docneda\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">Neda Yazdi, MD<\/span><\/a><span style=\"font-weight: 400;\">, a rheumatologist in San Diego, California. \u201cMany people have heard of it but are unsure what it is.\u201d<\/span><\/p>\n<h2><span style=\"font-weight: 400;\">Who is most at risk for lupus?<\/span><\/h2>\n<p><span style=\"font-weight: 400;\">Lupus may affect as many as <\/span><a href=\"https:\/\/www.cdc.gov\/lupus\/basics\/women.htm\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">1.5 million Americans<\/span><\/a><span style=\"font-weight: 400;\">, but it is significantly more common in women ages 15 to 44 years\u2014who make up 9 out of 10 new diagnoses overall. It also has the highest prevalence among women of color including African-American and Hispanic women.\u00a0 There are different types of lupus, including some variants that affect newborns and children.<\/span><\/p>\n<h2><span style=\"font-weight: 400;\">Lupus treatment<\/span><\/h2>\n<p><span style=\"font-weight: 400;\">As I sat there that day in the doctor\u2019s office, the only thing I could think to ask was, \u201cShould I change my diet?\u201d My healthcare provider noted that there was some evidence that lifestyle changes, such as an anti-inflammatory diet, might make a difference, but a prescription is what would really help.<\/span><\/p>\n<p><b>RELATED: <\/b><a href=\"https:\/\/www.singlecare.com\/conditions\/lupus-treatment-and-medications\"><b>Lupus treatments and medications<\/b><\/a><\/p>\n<h3><span style=\"font-weight: 400;\">Medication<\/span><\/h3>\n<p><span style=\"font-weight: 400;\">I was prescribed hydroxychloroquine. \u201c[<a href=\"https:\/\/www.singlecare.com\/blog\/plaquenil-side-effects\/\">Plaquenil<\/a>] (<\/span><a href=\"https:\/\/www.singlecare.com\/prescription\/hydroxychloroquine-sulfate\"><span style=\"font-weight: 400;\">hydroxychloroquine<\/span><\/a><span style=\"font-weight: 400;\">) is a wonderful medication that we use very commonly for lupus patients,\u201d Dr. Yadzi says. \u201cIt not only helps with the joints and the skin, but it also helps to decrease any organ damage such as with the kidneys.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">For me, there was one drawback: It could take weeks before I felt a difference. I picked up my prescription that night and within a month, I began to feel better. Yet there was a nagging symptom. I still battled fatigue. That\u2019s when I was prescribed <\/span><a href=\"https:\/\/www.singlecare.com\/prescription\/modafinil\"><span style=\"font-weight: 400;\">Provigil (modafinil),<\/span><\/a><span style=\"font-weight: 400;\"> a stimulant medication that is used for excessive daytime sleepiness. On my first use, I felt like superwoman. I finally had the energy to meet my writing deadlines. I could fold my clothes and put away the dishes. It was a helpful medication for me, but it is really important to discuss its use with all of your healthcare providers since it can interfere with medications including cyclosporine, combined hormonal contraception (the pill, patch, or ring), benzodiazepines, and some anti-seizure medications.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">This combination worked for me, but lupus affects different people differently. Other medications that treat this condition include:<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">NSAIDS, like <\/span><a href=\"https:\/\/www.singlecare.com\/prescription\/advil\"><span style=\"font-weight: 400;\">Advil (ibuprofen)<\/span><\/a><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Other antimalarials, like <\/span><a href=\"https:\/\/www.singlecare.com\/prescription\/chloroquine-phosphate\"><span style=\"font-weight: 400;\">Aralen (chloroquine)<\/span><\/a><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Immunosuppressants, like <\/span><a href=\"https:\/\/www.singlecare.com\/prescription\/methotrexate\"><span style=\"font-weight: 400;\">Trexall (methotrexate)<\/span><\/a><span style=\"font-weight: 400;\"> and <\/span><a href=\"https:\/\/www.singlecare.com\/prescription\/imuran\"><span style=\"font-weight: 400;\">Imuran (azathioprine)<\/span><\/a><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Monoclonal antibodies, like <\/span><a href=\"https:\/\/www.singlecare.com\/prescription\/benlysta\"><span style=\"font-weight: 400;\">Benlysta<\/span><\/a><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Corticosteroids<\/span><\/li>\n<\/ul>\n<p><b>RELATED: <a href=\"https:\/\/www.singlecare.com\/prescription\/benlysta\/what-is\">What is Benlysta?<\/a><\/b><\/p>\n<h3><span style=\"font-weight: 400;\">Physical therapy<\/span><\/h3>\n<p><span style=\"font-weight: 400;\">At a follow-up appointment, I mentioned that my pain levels were down, but that I still didn\u2019t feel like myself. I wanted to swim, walk, go to spin class, and do yoga like I used to. And for that, I was prescribed physical therapy (PT).<\/span><\/p>\n<p><span style=\"font-weight: 400;\">I\u2019d been through PT before for a torn meniscus and a herniated disc. I expected therapy to help, that I\u2019d be prescribed a regimen of exercises to fix me. What I received instead was a lesson in how to scale back my workouts to work with the lupus.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">This was hard for me. I was used to a \u201cno pain, no gain\u201d approach to fitness\u2014I didn\u2019t know how to slow down or listen to my body and give it the rest it needed. But I re-learned how to exercise in a way that would restore my strength and cardio fitness, but not deplete me, and I started to feel better.<\/span><\/p>\n<h2><span style=\"font-weight: 400;\">Dealing with lupus flares\u00a0<\/span><\/h2>\n<p><span style=\"font-weight: 400;\">At that point, I began to feel like myself again. But what I didn\u2019t know was that while the hydroxychloroquine was helping my body fight the lupus, I could still experience flares\u2014an exacerbation of symptoms.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">It was summer time, and I was spending a lot of time in the sun, by the beach, and staying active\u2014leading a normal Los <\/span><span style=\"font-weight: 400;\">Angeles life. What I know now is that that was a bad choice.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">\u201cThe UVA and UVB rays from the sun can trigger a lupus flare,\u201d explains<\/span> <a href=\"https:\/\/maggiecadetmd.com\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">Magdalena Cadet, MD<\/span><\/a><span style=\"font-weight: 400;\">, a NYC-based clinical rheumatologist. \u201cA rash on the face or body may develop minutes, days, and even up to a week after sun exposure.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">I had gotten the rashes and my fatigue increased, but I ignored these signs, not understanding what was happening to my body.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">\u201cCell damage (DNA damage) can occur with ultraviolet radiation and normally the dead cells are cleared in a healthy individual,\u201d Dr. Cadet explains. \u201cIn lupus patients, there is a reduction in the speed of clearance of these damaged cells triggering the immune response.\u201d\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">For me, being out in the sun caused a lupus flare. Other <\/span><a href=\"https:\/\/doi.org\/10.1155\/2014\/816729\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">common triggers<\/span><\/a><span style=\"font-weight: 400;\"> include:<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Stress<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Infection<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Doing too much<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Being run down<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Overheating<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Alcohol or drug use<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">When the summer ended, the excruciating pain in my bones was back. The fatigue was full blown. I scaled back on exercise, avoided the sun, and rested more, but it didn\u2019t help.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">That\u2019s when I was given a short course of <\/span><a href=\"https:\/\/www.singlecare.com\/prescription\/methylprednisolone\"><span style=\"font-weight: 400;\">Medrol (methylprednisolone)<\/span><\/a><span style=\"font-weight: 400;\">, a steroid. I took it for a week and eventually began to return to what I call my \u201clupus normal.\u201d<\/span><\/p>\n<h2><span style=\"font-weight: 400;\">Living with lupus<\/span><\/h2>\n<p><span style=\"font-weight: 400;\">My \u201clupus normal\u201d looks different from the normal I used to know before diagnosis. I now have to constantly monitor myself. It also means that I appreciate every day I can get up and go.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Sometimes a <\/span><a href=\"https:\/\/www.singlecare.com\/blog\/tylenol-dosage\/\"><span style=\"font-weight: 400;\">dose of Tylenol (acetaminophen)<\/span><\/a> <span style=\"font-weight: 400;\">will help with the pain, but sometimes it means completely avoiding the sun and stopping most physical activity for a week or longer. Your provider may recommend or prescribe a non-steroidal anti-inflammatory drug (NSAID) like ibuprofen or naproxen, which can treat both pain and inflammation. However, because NSAIDs can impact kidney function, it is important you check with your provider before taking these medications.\u00a0\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">To live your best life with lupus, you will want to receive regular medical care with both your primary care provider and your rheumatologist. Together, you should work out a plan for care, which may include checking your eyes, kidney function, blood counts, routine cancer screenings, and keeping all <\/span><a href=\"https:\/\/www.aafp.org\/afp\/2016\/0815\/p284.html\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">vaccinations up to date<\/span><\/a><span style=\"font-weight: 400;\">. It is also really important that women of child-bearing age discuss pregnancy and contraception use with their providers since both of these factors can have a significant impact on their health.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">My \u201clupus normal\u201d is a normal I\u2019m grateful for because it\u2019s taught me to slow down, pay attention to my body, and say no to the things that will drain me both mentally and physically\u2014and those are habits that are useful, chronic conditions or not.<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>\u201cYou have lupus,\u201d the doctor said. I sat stunned that day in my rheumatologist\u2019s office. I knew nothing about the disease. Would my symptoms ever go away? Is there a cure? I didn\u2019t know the first thing about living with lupus\u2014or how to treat my pain. The only thing I knew was that my symptoms [&hellip;]<\/p>\n","protected":false},"author":94,"featured_media":36790,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[8318],"tags":[790],"coauthors":[20810],"class_list":["post-34397","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-community","tag-chronic-disease","wpautop"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.4 (Yoast SEO v27.4) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Living with lupus: The treatments that helped me find a new normal<\/title>\n<meta name=\"description\" content=\"Can you live a normal life with lupus? Living with lupus means avoiding certain triggers and sometimes taking medications. 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