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_ngcontent-serverapp-c2702069511 class="post-block" id="post-section"><div _ngcontent-serverapp-c2702069511 class="pb-head"><h3 _ngcontent-serverapp-c2702069511 class="pb-title"><a _ngcontent-serverapp-c2702069511 id="post-title-link" href="/groups/vasculitis-voices/discussion/48ae54-what-rituximab-symptoms-did-you-have/"> What rituximab symptoms did YOU have? </a></h3></div><div _ngcontent-serverapp-c2702069511 class="pb-stamp"><div _ngcontent-serverapp-c2702069511> New reply November 26, 2024 • 12:34 AM </div></div><div _ngcontent-serverapp-c2702069511 class="pb-body"><p _ngcontent-serverapp-c2702069511 id="post-snippet" class="pb-desc"> Hello! I was recently diagnosed with ANCA associated vasculitis microscopic polyangiitis. I had profound hearing loss and lost my hearing over a month. Started on high dose pred and my hearing returne <span _ngcontent-serverapp-c2702069511> ... <a _ngcontent-serverapp-c2702069511 id="post-read-more-link" class="pb-readmore"> Show more </a></span></p></div><div _ngcontent-serverapp-c2702069511 class="pb-meta"><span _ngcontent-serverapp-c2702069511>Wolverine21</span><span _ngcontent-serverapp-c2702069511>6 replies</span><span _ngcontent-serverapp-c2702069511>0 Reactions</span></div></section></ins-anon-post><section _ngcontent-serverapp-c1809241069 class="articles-carousel"><ins-search-carousel _ngcontent-serverapp-c1809241069 _nghost-serverapp-c2350682097><div _ngcontent-serverapp-c2350682097 class="search-result-carousel-block"><div _ngcontent-serverapp-c2350682097 class="srcb-head">Related Articles</div><ins-carousel _ngcontent-serverapp-c2350682097 class="srcb-articles srcb-carousel"><div class="glide" id="glide-carousel-1732782463401"><div data-glide-el="track" class="glide__track"><div class="glide__slides"><div _ngcontent-serverapp-c2350682097 carouselslide class="glide__slide"><ins-article-card _ngcontent-serverapp-c2350682097 _nghost-serverapp-c1861685236 id="search-article-0"><div _ngcontent-serverapp-c1861685236 class="article-card-block"><figure _ngcontent-serverapp-c1861685236 class="acb-figure"><img _ngcontent-serverapp-c1861685236 loading="lazy" src="https://static.inspire.com/sponsored-resource-center/images/gb21x26ak63g_3Lp7PSiHg3gWN521EzTaWW_75b95ff5c196a29f57a68aaffbb2c285_GettyImages-501870953-1200x630__1_.jpg" alt></figure><h2 _ngcontent-serverapp-c1861685236 class="acb-title"> What Is Cholesterol? </h2><p _ngcontent-serverapp-c1861685236 class="acb-desc"> Cholesterol is a fat-like substance crucial for healthy cells, hormones, and vitamin D. It's made by the liver and comes from food. Too much "bad" LDL cholesterol can build up plaques, causing heart attacks or strokes. Eating healthy, staying active, and quitting smoking help reduce your risk. </p><div _ngcontent-serverapp-c1861685236 class="acb-category"> Cardiovascular disease </div><div _ngcontent-serverapp-c1861685236 class="acb-subcategory">Resource Center</div></div></ins-article-card></div><div _ngcontent-serverapp-c2350682097 carouselslide class="glide__slide"><ins-article-card _ngcontent-serverapp-c2350682097 _nghost-serverapp-c1861685236 id="search-article-1"><div _ngcontent-serverapp-c1861685236 class="article-card-block"><figure _ngcontent-serverapp-c1861685236 class="acb-figure"><img _ngcontent-serverapp-c1861685236 loading="lazy" src="https://static.inspire.com/sponsored-resource-center/images/gb21x26ak63g_1h5l4TJlAlzVqNhyzdK8lC_7cc435bdc9063e62d3db2d532d905343_1_GettyImages-1062184824-300x300.jpg" alt></figure><h2 _ngcontent-serverapp-c1861685236 class="acb-title"> Taking Action Through Shared Decision-Making With Your Healthcare Provider </h2><p _ngcontent-serverapp-c1861685236 class="acb-desc"> Learn about shared decision-making to work with your healthcare provider to manage your cholesterol levels. Discuss options for treatment, express your preferences, and together choose the best plan for you. This is about teamwork and it is a continuous process. </p><div _ngcontent-serverapp-c1861685236 class="acb-category"> Cardiovascular disease </div><div _ngcontent-serverapp-c1861685236 class="acb-subcategory">Resource Center</div></div></ins-article-card></div><div _ngcontent-serverapp-c2350682097 carouselslide class="glide__slide"><ins-article-card _ngcontent-serverapp-c2350682097 _nghost-serverapp-c1861685236 id="search-article-2"><div _ngcontent-serverapp-c1861685236 class="article-card-block"><figure _ngcontent-serverapp-c1861685236 class="acb-figure"><img _ngcontent-serverapp-c1861685236 loading="lazy" src="https://static.inspire.com/sponsored-resource-center/images/gb21x26ak63g_7rxL1Nth2jgn810qAWeF01_ef1ac4cf5beae9e4d34f13a7d5e3fc2f_Small_Thumbnail__1_.jpg" alt></figure><h2 _ngcontent-serverapp-c1861685236 class="acb-title"> What is Lp(a)? </h2><p _ngcontent-serverapp-c1861685236 class="acb-desc"> Lp(a), or lipoprotein (a), is a type of cholesterol made in the liver that carries fats and proteins in your blood. Think of Lp(a) as a ball with a special protein tag that can stick to blood vessels, causing plaques. High Lp(a) can lead to heart problems. </p><div _ngcontent-serverapp-c1861685236 class="acb-category"> Cardiovascular disease </div><div _ngcontent-serverapp-c1861685236 class="acb-subcategory">Resource Center</div></div></ins-article-card></div><div _ngcontent-serverapp-c2350682097 carouselslide class="glide__slide"><ins-article-card _ngcontent-serverapp-c2350682097 _nghost-serverapp-c1861685236 id="search-article-3"><div _ngcontent-serverapp-c1861685236 class="article-card-block"><figure _ngcontent-serverapp-c1861685236 class="acb-figure"><img _ngcontent-serverapp-c1861685236 loading="lazy" src="https://static.inspire.com/sponsored-resource-center/images/gb21x26ak63g_6dkAbreQyQ03nMqgj0EHjr_3a50e6d669829280f4f561c232cfdc22_Small_Thumbnail__1_.jpg" alt></figure><h2 _ngcontent-serverapp-c1861685236 class="acb-title"> Integrating Lipoprotein(a) Into Clinical Visits </h2><p _ngcontent-serverapp-c1861685236 class="acb-desc"> Healthcare providers consider risk factors, personal and family medical history, and habits to determine your risk of cardiovascular disease. High Lp(a) is an independent risk factor, meaning even if you have no other risks, high Lp(a) alone is enough to increase your risk of cardiovascular disease. Knowing your Lp(a) level is important for a complete risk assessment. </p><div _ngcontent-serverapp-c1861685236 class="acb-category"> Cardiovascular disease </div><div _ngcontent-serverapp-c1861685236 class="acb-subcategory">Resource Center</div></div></ins-article-card></div><div _ngcontent-serverapp-c2350682097 carouselslide class="glide__slide"><ins-article-card _ngcontent-serverapp-c2350682097 _nghost-serverapp-c1861685236 id="search-article-4"><div _ngcontent-serverapp-c1861685236 class="article-card-block"><figure _ngcontent-serverapp-c1861685236 class="acb-figure"><img _ngcontent-serverapp-c1861685236 loading="lazy" src="https://static.inspire.com/sponsored-resource-center/images/gb21x26ak63g_6JdDvuk8zHFTCjEYv2csC2_8429107f6f543da074b6f8e88c1ff414_Small_Thumbnail__2_.jpg" alt></figure><h2 _ngcontent-serverapp-c1861685236 class="acb-title"> Genes and Lp(a) Cascade Screening </h2><p _ngcontent-serverapp-c1861685236 class="acb-desc"> Lp(a) is a type of lipoprotein that is linked to heart disease. Your genes, inherited from your parents, affect Lp(a) levels. High Lp(a) runs in families, so if one person has it, others might too. Cascade screening tests family members to find and help those at risk. </p><div _ngcontent-serverapp-c1861685236 class="acb-category"> Cardiovascular disease </div><div _ngcontent-serverapp-c1861685236 class="acb-subcategory">Resource Center</div></div></ins-article-card></div></div></div></div><a _ngcontent-serverapp-c2350682097 class="srcb-next"><ins-svg-icon _ngcontent-serverapp-c2350682097 icontype="arrow-right" _nghost-serverapp-c33518352><svg _ngcontent-serverapp-c33518352="" fill="currentColor" width="1em" height="1em" viewBox="0 0 1024 1024"><use _ngcontent-serverapp-c33518352="" href="/assets/svgs/symbol-defs.svg?t=7#arrow-right"/></svg></ins-svg-icon></a></ins-carousel></div></ins-search-carousel></section><app-call-to-action-prompt _ngcontent-serverapp-c1809241069 _nghost-serverapp-c1555552141><section _ngcontent-serverapp-c1555552141 class="call-action-banner-prompt health-communities-supporting"><img _ngcontent-serverapp-c1555552141 data-size="desktop" alt class="cabp-figure" src="/assets/img/health-communities-supporting.svg"><img _ngcontent-serverapp-c1555552141 data-size="mobile" alt class="cabp-figure" src="/assets/img/health-communities-supporting-mob.svg"><div _ngcontent-serverapp-c1555552141 class="cabp-inner"><h3 _ngcontent-serverapp-c1555552141 class="cabp-title">Inspire has over <span style="color:#f9d3a1">250 health communities</span> supporting more than <span style="color:#f9d3a1">3000 conditions</span></h3><a _ngcontent-serverapp-c1555552141 class="bttn bttn-navy cabp-btn">Join now</a></div></section></app-call-to-action-prompt><ins-anon-post _ngcontent-serverapp-c1809241069 observeelement class="community-post" _nghost-serverapp-c2702069511 id="post-feed-item-7536348145200254825" data-ins-parent-element="true" data-post-type="disc" data-post-id="7536348145200254825" data-post-title="CNS Vasculitis" data-post-group-id="200321" data-post-url="/groups/vasculitis-voices/discussion/fa5d9c-cns-vasculitis/"><section _ngcontent-serverapp-c2702069511 class="post-block" id="post-section"><div _ngcontent-serverapp-c2702069511 class="pb-head"><h3 _ngcontent-serverapp-c2702069511 class="pb-title"><a _ngcontent-serverapp-c2702069511 id="post-title-link" href="/groups/vasculitis-voices/discussion/fa5d9c-cns-vasculitis/"> CNS Vasculitis </a></h3></div><div _ngcontent-serverapp-c2702069511 class="pb-stamp"><div _ngcontent-serverapp-c2702069511> New reply November 05, 2024 • 3:38 PM </div></div><div _ngcontent-serverapp-c2702069511 class="pb-body"><p _ngcontent-serverapp-c2702069511 id="post-snippet" class="pb-desc"> Hi my name is Delilah, I’m 22 and I was diagnosed with Central Nervous System vasculitis in 2021, I’ve been on oral and IV steroids for years, I’ve been on azathioprine and have gotten several doses <span _ngcontent-serverapp-c2702069511> ... <a _ngcontent-serverapp-c2702069511 id="post-read-more-link" class="pb-readmore"> Show more </a></span></p></div><div _ngcontent-serverapp-c2702069511 class="pb-meta"><span _ngcontent-serverapp-c2702069511>djmonkey1720</span><span _ngcontent-serverapp-c2702069511>1 replies</span><span _ngcontent-serverapp-c2702069511>0 Reactions</span></div></section></ins-anon-post><app-inspire-ad _ngcontent-serverapp-c1809241069 _nghost-serverapp-c3229238076><div _ngcontent-serverapp-c3229238076 class="post-block-ad"><div _ngcontent-serverapp-c3229238076 class="inspire-ads pba-body" id="community-aside-interstitial-ad-300x250-0-0-1"></div><div _ngcontent-serverapp-c3229238076 class="pba-foot">Advertisement</div></div></app-inspire-ad><ins-anon-post _ngcontent-serverapp-c1809241069 observeelement class="community-post" _nghost-serverapp-c2702069511 id="post-feed-item-2450851879254869041" data-ins-parent-element="true" data-post-type="disc" data-post-id="2450851879254869041" data-post-title="EGPA and hypoxemia" data-post-group-id="200321" data-post-url="/groups/vasculitis-voices/discussion/17d223-egpa-and-hypoxemia/"><section _ngcontent-serverapp-c2702069511 class="post-block" id="post-section"><div _ngcontent-serverapp-c2702069511 class="pb-head"><h3 _ngcontent-serverapp-c2702069511 class="pb-title"><a _ngcontent-serverapp-c2702069511 id="post-title-link" href="/groups/vasculitis-voices/discussion/17d223-egpa-and-hypoxemia/"> EGPA and hypoxemia </a></h3></div><div _ngcontent-serverapp-c2702069511 class="pb-stamp"><div _ngcontent-serverapp-c2702069511> New reply November 04, 2024 • 7:35 PM </div></div><div _ngcontent-serverapp-c2702069511 class="pb-body"><p _ngcontent-serverapp-c2702069511 id="post-snippet" class="pb-desc"> Hello, wondering if anyone out there w EGPA has to use oxygen 24/7? I was diagnosed about 10 yrs ago. Biologics and steroids have symptoms in check. Blood work great - 0 eosinophils, heart good (r <span _ngcontent-serverapp-c2702069511> ... <a _ngcontent-serverapp-c2702069511 id="post-read-more-link" class="pb-readmore"> Show more </a></span></p></div><div _ngcontent-serverapp-c2702069511 class="pb-meta"><span _ngcontent-serverapp-c2702069511>JLCO</span><span _ngcontent-serverapp-c2702069511>2 replies</span><span _ngcontent-serverapp-c2702069511>0 Reactions</span></div></section></ins-anon-post><ins-anon-post _ngcontent-serverapp-c1809241069 observeelement class="community-post" _nghost-serverapp-c2702069511 id="post-feed-item-15116012699778840561" data-ins-parent-element="true" data-post-type="disc" data-post-id="15116012699778840561" data-post-title="PACS Brain vasculitis" data-post-group-id="200321" data-post-url="/groups/vasculitis-voices/discussion/af606e-pacs-brain-vasculitis/"><section _ngcontent-serverapp-c2702069511 class="post-block" id="post-section"><div _ngcontent-serverapp-c2702069511 class="pb-head"><h3 _ngcontent-serverapp-c2702069511 class="pb-title"><a _ngcontent-serverapp-c2702069511 id="post-title-link" href="/groups/vasculitis-voices/discussion/af606e-pacs-brain-vasculitis/"> PACS Brain vasculitis </a></h3></div><div _ngcontent-serverapp-c2702069511 class="pb-stamp"><div _ngcontent-serverapp-c2702069511> New reply October 25, 2024 • 11:08 PM </div></div><div _ngcontent-serverapp-c2702069511 class="pb-body"><p _ngcontent-serverapp-c2702069511 id="post-snippet" class="pb-desc"> Hi my name is Paola and I am from Italy I was diagnosed with brain vasculitis and I would like to know which is the best hospital in the USA for this matter because here in Italy I am trying to resol <span _ngcontent-serverapp-c2702069511> ... <a _ngcontent-serverapp-c2702069511 id="post-read-more-link" class="pb-readmore"> Show more </a></span></p></div><div _ngcontent-serverapp-c2702069511 class="pb-meta"><span _ngcontent-serverapp-c2702069511>Paola-Costa</span><span _ngcontent-serverapp-c2702069511>4 replies</span><span _ngcontent-serverapp-c2702069511>0 Reactions</span></div></section></ins-anon-post><ins-anon-post _ngcontent-serverapp-c1809241069 observeelement class="community-post" _nghost-serverapp-c2702069511 id="post-feed-item-1028805643814177532" data-ins-parent-element="true" data-post-type="disc" data-post-id="1028805643814177532" data-post-title="Folliculitis" data-post-group-id="200321" data-post-url="/groups/vasculitis-voices/discussion/cf0e0f-folliculitis/"><section _ngcontent-serverapp-c2702069511 class="post-block" id="post-section"><div _ngcontent-serverapp-c2702069511 class="pb-head"><h3 _ngcontent-serverapp-c2702069511 class="pb-title"><a _ngcontent-serverapp-c2702069511 id="post-title-link" href="/groups/vasculitis-voices/discussion/cf0e0f-folliculitis/"> Folliculitis </a></h3></div><div _ngcontent-serverapp-c2702069511 class="pb-stamp"><div _ngcontent-serverapp-c2702069511> New reply October 21, 2024 • 5:55 PM </div></div><div _ngcontent-serverapp-c2702069511 class="pb-body"><p _ngcontent-serverapp-c2702069511 id="post-snippet" class="pb-desc"> Hi. I have recurrent folliculitis since one year. It's almost always synchronised with flare. At first the betaderm (cortisone lotion) treatment help. But it getting worse (more lesion, bigger) and w <span _ngcontent-serverapp-c2702069511> ... <a _ngcontent-serverapp-c2702069511 id="post-read-more-link" class="pb-readmore"> Show more </a></span></p></div><div _ngcontent-serverapp-c2702069511 class="pb-meta"><span _ngcontent-serverapp-c2702069511>VroniqueBastien</span><span _ngcontent-serverapp-c2702069511>1 replies</span><span _ngcontent-serverapp-c2702069511>0 Reactions</span></div></section></ins-anon-post><ins-anon-post _ngcontent-serverapp-c1809241069 observeelement class="community-post" _nghost-serverapp-c2702069511 id="post-feed-item-6072256718140928856" data-ins-parent-element="true" data-post-type="disc" data-post-id="6072256718140928856" data-post-title="Grieving and craving the ‘healthy’ me." data-post-group-id="200321" data-post-url="/groups/vasculitis-voices/discussion/2539fa-grieving-and-craving-the-healthy-me/"><section _ngcontent-serverapp-c2702069511 class="post-block" id="post-section"><div _ngcontent-serverapp-c2702069511 class="pb-head"><h3 _ngcontent-serverapp-c2702069511 class="pb-title"><a _ngcontent-serverapp-c2702069511 id="post-title-link" href="/groups/vasculitis-voices/discussion/2539fa-grieving-and-craving-the-healthy-me/"> Grieving and craving the ‘healthy’ me. </a></h3></div><div _ngcontent-serverapp-c2702069511 class="pb-stamp"><div _ngcontent-serverapp-c2702069511> New reply October 18, 2024 • 7:15 PM </div></div><div _ngcontent-serverapp-c2702069511 class="pb-body"><p _ngcontent-serverapp-c2702069511 id="post-snippet" class="pb-desc"> We all wish for things. It’s human nature. I’d always wished for a ‘normal’ family. My Nan was (thank goodness) normal. More than that, she was loving, caring supportive and my best pal. When she die <span _ngcontent-serverapp-c2702069511> ... <a _ngcontent-serverapp-c2702069511 id="post-read-more-link" class="pb-readmore"> Show more </a></span></p></div><div _ngcontent-serverapp-c2702069511 class="pb-meta"><span _ngcontent-serverapp-c2702069511>Laura_Theo</span><span _ngcontent-serverapp-c2702069511>3 replies</span><span _ngcontent-serverapp-c2702069511>1 Reactions</span></div></section></ins-anon-post><ins-anon-post _ngcontent-serverapp-c1809241069 observeelement class="community-post" _nghost-serverapp-c2702069511 id="post-feed-item-11625491915298829949" data-ins-parent-element="true" data-post-type="disc" data-post-id="11625491915298829949" data-post-title="Steroids" data-post-group-id="200321" data-post-url="/groups/vasculitis-voices/discussion/560c5d-steroids/"><section _ngcontent-serverapp-c2702069511 class="post-block" id="post-section"><div _ngcontent-serverapp-c2702069511 class="pb-head"><h3 _ngcontent-serverapp-c2702069511 class="pb-title"><a _ngcontent-serverapp-c2702069511 id="post-title-link" href="/groups/vasculitis-voices/discussion/560c5d-steroids/"> Steroids </a></h3></div><div _ngcontent-serverapp-c2702069511 class="pb-stamp"><div _ngcontent-serverapp-c2702069511> New reply November 18, 2024 • 11:18 PM </div></div><div _ngcontent-serverapp-c2702069511 class="pb-body"><p _ngcontent-serverapp-c2702069511 id="post-snippet" class="pb-desc"> Hi all - I have been on steroids for about 8 months. While we are trying to get my dose lower and lower, I continue to struggle with side effects. I have gained about 30 pounds and am experiencing fai <span _ngcontent-serverapp-c2702069511> ... <a _ngcontent-serverapp-c2702069511 id="post-read-more-link" class="pb-readmore"> Show more </a></span></p></div><div _ngcontent-serverapp-c2702069511 class="pb-meta"><span _ngcontent-serverapp-c2702069511>Jay_Mc</span><span _ngcontent-serverapp-c2702069511>5 replies</span><span _ngcontent-serverapp-c2702069511>1 Reactions</span></div></section></ins-anon-post><app-inspire-ad _ngcontent-serverapp-c1809241069 _nghost-serverapp-c3229238076><div _ngcontent-serverapp-c3229238076 class="post-block-ad"><div _ngcontent-serverapp-c3229238076 class="inspire-ads pba-body" id="community-aside-interstitial-ad-300x250-0-0-6"></div><div _ngcontent-serverapp-c3229238076 class="pba-foot">Advertisement</div></div></app-inspire-ad><ins-anon-post _ngcontent-serverapp-c1809241069 observeelement class="community-post" _nghost-serverapp-c2702069511 id="post-feed-item-13988030025025600904" data-ins-parent-element="true" data-post-type="disc" data-post-id="13988030025025600904" data-post-title="Prednisone cause weight lost for me" data-post-group-id="200321" data-post-url="/groups/vasculitis-voices/discussion/697375-prednisone-make-me-loose-weight/"><section _ngcontent-serverapp-c2702069511 class="post-block" id="post-section"><div _ngcontent-serverapp-c2702069511 class="pb-head"><h3 _ngcontent-serverapp-c2702069511 class="pb-title"><a _ngcontent-serverapp-c2702069511 id="post-title-link" href="/groups/vasculitis-voices/discussion/697375-prednisone-make-me-loose-weight/"> Prednisone cause weight lost for me </a></h3></div><div _ngcontent-serverapp-c2702069511 class="pb-stamp"><div _ngcontent-serverapp-c2702069511> New reply October 08, 2024 • 12:51 PM </div></div><div _ngcontent-serverapp-c2702069511 class="pb-body"><p _ngcontent-serverapp-c2702069511 id="post-snippet" class="pb-desc"> Hi. I wonder if anyone have the same thing than me. On prednisone i'm my old self again. Happy, more energy, i am stronger, have more endurance, no cough or chest pain, less skin lesions and itchines <span _ngcontent-serverapp-c2702069511> ... <a _ngcontent-serverapp-c2702069511 id="post-read-more-link" class="pb-readmore"> Show more </a></span></p></div><div _ngcontent-serverapp-c2702069511 class="pb-meta"><span _ngcontent-serverapp-c2702069511>VroniqueBastien</span><span _ngcontent-serverapp-c2702069511>2 replies</span><span _ngcontent-serverapp-c2702069511>0 Reactions</span></div></section></ins-anon-post><ins-anon-post _ngcontent-serverapp-c1809241069 observeelement class="community-post" _nghost-serverapp-c2702069511 id="post-feed-item-17751736634609940429" data-ins-parent-element="true" data-post-type="disc" data-post-id="17751736634609940429" data-post-title="CSVV whole body affected" data-post-group-id="200321" data-post-url="/groups/vasculitis-voices/discussion/9ba877-csvv-whole-body-affected/"><section _ngcontent-serverapp-c2702069511 class="post-block" id="post-section"><div _ngcontent-serverapp-c2702069511 class="pb-head"><h3 _ngcontent-serverapp-c2702069511 class="pb-title"><a _ngcontent-serverapp-c2702069511 id="post-title-link" href="/groups/vasculitis-voices/discussion/9ba877-csvv-whole-body-affected/"> CSVV whole body affected </a></h3></div><div _ngcontent-serverapp-c2702069511 class="pb-stamp"><div _ngcontent-serverapp-c2702069511> New reply October 05, 2024 • 2:25 AM </div></div><div _ngcontent-serverapp-c2702069511 class="pb-body"><p _ngcontent-serverapp-c2702069511 id="post-snippet" class="pb-desc"> In August 2024, I was diagnosed with leukocytoclastic vasculitis ( CSVV) by a skin biopsy. However, from the onset, I have had symptoms that have affected my whole body and not just the skin. Labs l <span _ngcontent-serverapp-c2702069511> ... <a _ngcontent-serverapp-c2702069511 id="post-read-more-link" class="pb-readmore"> Show more </a></span></p></div><div _ngcontent-serverapp-c2702069511 class="pb-meta"><span _ngcontent-serverapp-c2702069511>Nina_W</span><span _ngcontent-serverapp-c2702069511>2 replies</span><span _ngcontent-serverapp-c2702069511>0 Reactions</span></div></section></ins-anon-post><ins-anon-post _ngcontent-serverapp-c1809241069 observeelement class="community-post" _nghost-serverapp-c2702069511 id="post-feed-item-14381746585852161033" data-ins-parent-element="true" data-post-type="disc" data-post-id="14381746585852161033" data-post-title="Echooo... Newly diagnosed need some wisdom to hear me" data-post-group-id="200321" data-post-url="/groups/vasculitis-voices/discussion/4b6676-echooo-newly-diagnosed-need-some-wisdom-to-hear-me/"><section _ngcontent-serverapp-c2702069511 class="post-block" id="post-section"><div _ngcontent-serverapp-c2702069511 class="pb-head"><h3 _ngcontent-serverapp-c2702069511 class="pb-title"><a _ngcontent-serverapp-c2702069511 id="post-title-link" href="/groups/vasculitis-voices/discussion/4b6676-echooo-newly-diagnosed-need-some-wisdom-to-hear-me/"> Echooo... Newly diagnosed need some wisdom to hear me </a></h3></div><div _ngcontent-serverapp-c2702069511 class="pb-stamp"><div _ngcontent-serverapp-c2702069511> New reply October 03, 2024 • 4:07 PM </div></div><div _ngcontent-serverapp-c2702069511 class="pb-body"><p _ngcontent-serverapp-c2702069511 id="post-snippet" class="pb-desc"> Hello I'm Jeremy. I'm 47 diagnosed 8/21/24 w/ microscopic polyangina anca. That affects my ankles down tho toes nerves and muscle , it is also attacking my left hand ulnar nerve/muscle. I've lost ma <span _ngcontent-serverapp-c2702069511> ... <a _ngcontent-serverapp-c2702069511 id="post-read-more-link" class="pb-readmore"> Show more </a></span></p></div><div _ngcontent-serverapp-c2702069511 class="pb-meta"><span _ngcontent-serverapp-c2702069511>Jeremy-Numbfoot</span><span _ngcontent-serverapp-c2702069511>6 replies</span><span _ngcontent-serverapp-c2702069511>0 Reactions</span></div></section></ins-anon-post></div><div _ngcontent-serverapp-c3626312683 class="load-more"></div></div><div _ngcontent-serverapp-c1498454023></div></ins-infinite-scroll></app-post-feed-wrapper></div></div></div></main><aside _ngcontent-serverapp-c1809241069 class="sider-track sider-track-right"><div _ngcontent-serverapp-c1809241069 class="widget-box"><ins-community-members _ngcontent-serverapp-c1809241069 id="desktop-community-members" _nghost-serverapp-c850839045><section _ngcontent-serverapp-c850839045 class="widget-pack community-members-widget"><div _ngcontent-serverapp-c850839045 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It's made by the liver and comes from food. Too much \"bad\" LDL cholesterol can build up plaques, causing heart attacks or strokes. Eating healthy, staying active, and quitting smoking help reduce your risk.","imagetitle":"","imageurl":"https://static.inspire.com/sponsored-resource-center/images/gb21x26ak63g_3Lp7PSiHg3gWN521EzTaWW_75b95ff5c196a29f57a68aaffbb2c285_GettyImages-501870953-1200x630__1_.jpg","pageid":"/resources/cardiovascular-disease/what-is-cholesterol","parenttitle":"Cardiovascular disease","parenturi":"/resources/cardiovascular-disease","posted":"2024-11-14","title":"What Is Cholesterol?"},{"desc":"Learn about shared decision-making to work with your healthcare provider to manage your cholesterol levels. Discuss options for treatment, express your preferences, and together choose the best plan for you. This is about teamwork and it is a continuous process. ","imagetitle":"","imageurl":"https://static.inspire.com/sponsored-resource-center/images/gb21x26ak63g_1h5l4TJlAlzVqNhyzdK8lC_7cc435bdc9063e62d3db2d532d905343_1_GettyImages-1062184824-300x300.jpg","pageid":"/resources/cardiovascular-disease/taking-action-through-shared-decision-making-with-your-healthcare-provider","parenttitle":"Cardiovascular disease","parenturi":"/resources/cardiovascular-disease","posted":"2024-11-14","title":"Taking Action Through Shared Decision-Making With Your Healthcare Provider"},{"desc":"Lp(a), or lipoprotein (a), is a type of cholesterol made in the liver that carries fats and proteins in your blood. Think of Lp(a) as a ball with a special protein tag that can stick to blood vessels, causing plaques. High Lp(a) can lead to heart problems.","imagetitle":"","imageurl":"https://static.inspire.com/sponsored-resource-center/images/gb21x26ak63g_7rxL1Nth2jgn810qAWeF01_ef1ac4cf5beae9e4d34f13a7d5e3fc2f_Small_Thumbnail__1_.jpg","pageid":"/resources/cardiovascular-disease/what-is-lp-a","parenttitle":"Cardiovascular disease","parenturi":"/resources/cardiovascular-disease","posted":"2024-11-14","title":"What is Lp(a)?"},{"desc":"Healthcare providers consider risk factors, personal and family medical history, and habits to determine your risk of cardiovascular disease. High Lp(a) is an independent risk factor, meaning even if you have no other risks, high Lp(a) alone is enough to increase your risk of cardiovascular disease. Knowing your Lp(a) level is important for a complete risk assessment.","imagetitle":"","imageurl":"https://static.inspire.com/sponsored-resource-center/images/gb21x26ak63g_6dkAbreQyQ03nMqgj0EHjr_3a50e6d669829280f4f561c232cfdc22_Small_Thumbnail__1_.jpg","pageid":"/resources/cardiovascular-disease/integrating-lipoprotein-a-into-clinical-visits","parenttitle":"Cardiovascular disease","parenturi":"/resources/cardiovascular-disease","posted":"2024-11-14","title":"Integrating Lipoprotein(a) Into Clinical Visits"},{"desc":"Lp(a) is a type of lipoprotein that is linked to heart disease. Your genes, inherited from your parents, affect Lp(a) levels. High Lp(a) runs in families, so if one person has it, others might too. Cascade screening tests family members to find and help those at risk. ","imagetitle":"","imageurl":"https://static.inspire.com/sponsored-resource-center/images/gb21x26ak63g_6JdDvuk8zHFTCjEYv2csC2_8429107f6f543da074b6f8e88c1ff414_Small_Thumbnail__2_.jpg","pageid":"/resources/cardiovascular-disease/genes-and-lp-a-cascade-screening","parenttitle":"Cardiovascular disease","parenturi":"/resources/cardiovascular-disease","posted":"2024-11-14","title":"Genes and Lp(a) Cascade Screening"},{"desc":"Atherosclerosis is a condition where arteries become narrow and hard due to cholesterol build-up on their inner walls, forming plaques. This can lead to serious conditions like heart attacks and strokes. Prevention through lifestyle changes like healthy eating, exercise, and quitting smoking is key to maintaining artery health and overall well-being. ","imagetitle":"","imageurl":"https://static.inspire.com/sponsored-resource-center/images/gb21x26ak63g_49hGYdwxwC9LiPxc445T3L_3d0a725f5d12f9c50fb72a331d81f083_GettyImages-1035963704-300x300.jpg","pageid":"/resources/cardiovascular-disease/what-is-atherosclerosis","parenttitle":"Cardiovascular disease","parenturi":"/resources/cardiovascular-disease","posted":"2024-11-14","title":"What Is Atherosclerosis?"},{"desc":"Cardiovascular disease (CVD) affects the heart and blood vessels. It's often caused by atherosclerosis, where arteries narrow due to plaque buildup. Lp(a) is a type of cholesterol that is linked to increased CVD risk by causing plaque, inflammation, and blood clots. High Lp(a) is mostly genetic.","imagetitle":"","imageurl":"https://static.inspire.com/sponsored-resource-center/images/gb21x26ak63g_bncTWQG7EPoZMI6Ux0mZJ_ca6d842b2b60d9fff9e5d0dc1f6625a0_Small_Thumbnail.jpg","pageid":"/resources/cardiovascular-disease/what-is-cvd-and-how-does-lp-a-relate-to-cv-risk","parenttitle":"Cardiovascular disease","parenturi":"/resources/cardiovascular-disease","posted":"2024-11-14","title":"What Is CVD and How Does Lp(a) Relate to CV Risk?"},{"desc":"When LDL-C, or \"bad cholesterol,\" is high, it can cause heart attacks and strokes. It’s important to know your LDL-C levels. Having a healthy diet, staying active, maintaining a healthy weight, and not smoking help protect your heart and brain.","imagetitle":"","imageurl":"https://static.inspire.com/sponsored-resource-center/images/gb21x26ak63g_51rXku3bqboKVMjp8Hz784_3422a57306804708203a9247a652239e_GettyImages-151333356-300x300.jpg","pageid":"/resources/cardiovascular-disease/what-is-ldl-c","parenttitle":"Cardiovascular disease","parenturi":"/resources/cardiovascular-disease","posted":"2024-11-14","title":"What is LDL-C?"}],"desc":null,"imagetitle":null,"imageurl":null,"pageid":"cardiovascular-disease","title":"Cardiovascular disease"}],"state":"MO","topics":[{"description":"","f_suppressed":"0","group_id":"200321","name":"Mental health","name_id":"mental-health","parent_id":null,"sort_order":"1","topic_id":"3978"},{"description":"","f_suppressed":"0","group_id":"200321","name":"Symptoms","name_id":"symptoms","parent_id":null,"sort_order":"2","topic_id":"3979"},{"description":"","f_suppressed":"0","group_id":"200321","name":"Steroids","name_id":"steroids","parent_id":null,"sort_order":"3","topic_id":"3980"},{"description":"","f_suppressed":"0","group_id":"200321","name":"Treatments","name_id":"treatments","parent_id":null,"sort_order":"4","topic_id":"3981"},{"description":"","f_suppressed":"0","group_id":"200321","name":"Pregnancy/family planning","name_id":"pregnancy-family-planning","parent_id":null,"sort_order":"5","topic_id":"3982"},{"description":"","f_suppressed":"0","group_id":"200321","name":"Large vessel (TAK, GCA, aortitis, Cogan's, PMR)","name_id":"large-vessel-tak-gca-aortitis-cogan-s-pmr","parent_id":null,"sort_order":"6","topic_id":"3983"},{"description":"","f_suppressed":"0","group_id":"200321","name":"Medium vessel (PAN, Kawasaki's)","name_id":"medium-vessel-pan-kawasaki-s","parent_id":null,"sort_order":"7","topic_id":"3984"},{"description":"","f_suppressed":"0","group_id":"200321","name":"ANCA associated (MPA, GPA, EGPA)","name_id":"anca-associated-mpa-gpa-egpa","parent_id":null,"sort_order":"8","topic_id":"3985"},{"description":"","f_suppressed":"0","group_id":"200321","name":"Small vessel (Cryo, IgA, Urticarial, Anti-GBM, rheumatoid, cutaneous)","name_id":"small-vessel-cryo-iga-urticarial-anti-gbm-rheumatoid-cutaneous","parent_id":null,"sort_order":"9","topic_id":"3986"},{"description":"","f_suppressed":"0","group_id":"200321","name":"Behçet's","name_id":"beh-ets","parent_id":null,"sort_order":"10","topic_id":"3987"},{"description":null,"f_suppressed":"0","group_id":"200321","name":"CNS","name_id":"cns","parent_id":null,"sort_order":"11","topic_id":"3994"},{"description":"","f_suppressed":"0","group_id":"200321","name":"Care partners","name_id":"care-partners","parent_id":null,"sort_order":"12","topic_id":"3988"},{"description":"","f_suppressed":"0","group_id":"200321","name":"Parents","name_id":"parents","parent_id":null,"sort_order":"13","topic_id":"3989"},{"description":"","f_suppressed":"0","group_id":"200321","name":"Remission and flares","name_id":"remission-and-flares","parent_id":null,"sort_order":"14","topic_id":"3990"},{"description":null,"f_suppressed":"0","group_id":"200321","name":"Under 30","name_id":"under-30","parent_id":null,"sort_order":"15","topic_id":"3993"},{"description":null,"f_suppressed":"0","group_id":"200321","name":"General","name_id":"general","parent_id":null,"sort_order":"16","topic_id":"3992"}],"web_site":"https://www.vasculitisfoundation.org","isPrivate":null},"status":"success"},"getCommunityPosts":{"status":"success","data":{"PostFeed":[{"id":"14365898209212293998","title":"What rituximab symptoms did YOU have?","slug":"disc-48ae54-what-rituximab-symptoms-did-you-have","author":{"avatar":{"small":"/assets/images/you-small.png","__typename":"Avatar"},"friendship":null,"site_roles":[],"nickname":"Wolverine21","status":4,"__typename":"User"},"groups":[{"name_id":"vasculitis-voices","group_id":200321,"name":"Vasculitis Voices","topics":[{"id":3979,"name":"Symptoms","__typename":"Topic"}],"__typename":"Group"}],"created":"2024-11-23T16:39:34Z","active":"2024-11-26T00:34:39Z","content":"Hello!\u003Cdiv>I was recently diagnosed with ANCA associated vasculitis microscopic polyangiitis. I had profound hearing loss and lost my hearing over a month. Started on high dose pred and my hearing returned! Tried azathioprine but my nausea and vomiting was a grade 4 so we had to stop. My MD wants me to start rituximab but with the holidays coming up I don’t know when to schedule my first appt. I want to know what kind of symptoms others had and how long after their first couple of treatments they had these symptoms for? \u003C/div>","reply_count":6,"url":"/groups/vasculitis-voices/discussion/48ae54-what-rituximab-symptoms-did-you-have/","is_followed":false,"privacy":"public","class":"disc","reactions":[{"type":"SUPPORT","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"},{"type":"THANKS","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"},{"type":"USEFUL","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"}],"__typename":"Post","files":[],"sticky":false,"experiment_id":null},{"id":"7536348145200254825","title":"CNS Vasculitis","slug":"disc-fa5d9c-cns-vasculitis","author":{"avatar":{"small":"/assets/images/you-small.png","__typename":"Avatar"},"friendship":null,"site_roles":[],"nickname":"djmonkey1720","status":4,"__typename":"User"},"groups":[{"name_id":"vasculitis-voices","group_id":200321,"name":"Vasculitis Voices","topics":[{"id":3993,"name":"Under 30","__typename":"Topic"}],"__typename":"Group"}],"created":"2024-11-05T05:34:16Z","active":"2024-11-05T15:38:26Z","content":"\u003Cp>Hi my name is Delilah, I’m 22 and I was diagnosed with Central Nervous System vasculitis in 2021, I’ve been on oral and IV steroids for years, I’ve been on azathioprine and have gotten several doses of Rituximab. Anyone out there with a similar story or illness? \u003C/p>","reply_count":1,"url":"/groups/vasculitis-voices/discussion/fa5d9c-cns-vasculitis/","is_followed":false,"privacy":"public","class":"disc","reactions":[{"type":"SUPPORT","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"},{"type":"THANKS","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"},{"type":"USEFUL","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"}],"__typename":"Post","files":[],"sticky":false,"experiment_id":null},{"id":"2450851879254869041","title":"EGPA and hypoxemia","slug":"disc-17d223-egpa-and-hypoxemia","author":{"avatar":{"small":"/assets/images/you-small.png","__typename":"Avatar"},"friendship":null,"site_roles":[],"nickname":"JLCO","status":4,"__typename":"User"},"groups":[{"name_id":"vasculitis-voices","group_id":200321,"name":"Vasculitis Voices","topics":[{"id":3985,"name":"ANCA associated (MPA, GPA, EGPA)","__typename":"Topic"}],"__typename":"Group"}],"created":"2024-11-02T20:58:04Z","active":"2024-11-04T19:35:28Z","content":"\u003Cp>Hello, wondering if anyone out there w EGPA has to use oxygen 24/7? I was diagnosed about 10 yrs ago. Biologics and steroids have symptoms in check. Blood work great - 0 eosinophils, heart good (right heart catherization), Lungs good (CTs w contrast/Pulm angiogram-no PAVMs). Used to need oxygen at higher elevations (I live at about 5000 ft). About 2 1/2 years ago, thought I was having a flare. Needed more oxygen, especially with exertion. Seems to be slowly getting worse. Need 4L when sitting. Got a 6L POC which helps when out and about, but can't walk a block on 6L without O2 dipping into the 70s. Have great drs at two large hospitals but they are stumped. Has to be EGPA related, right? TY.\u003C/p>","reply_count":2,"url":"/groups/vasculitis-voices/discussion/17d223-egpa-and-hypoxemia/","is_followed":false,"privacy":"public","class":"disc","reactions":[{"type":"SUPPORT","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"},{"type":"THANKS","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"},{"type":"USEFUL","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"}],"__typename":"Post","files":[],"sticky":false,"experiment_id":null},{"id":"15116012699778840561","title":"PACS Brain vasculitis","slug":"disc-af606e-pacs-brain-vasculitis","author":{"avatar":{"small":"/assets/images/you-small.png","__typename":"Avatar"},"friendship":null,"site_roles":[],"nickname":"Paola-Costa","status":4,"__typename":"User"},"groups":[{"name_id":"vasculitis-voices","group_id":200321,"name":"Vasculitis Voices","topics":[{"id":3981,"name":"Treatments","__typename":"Topic"}],"__typename":"Group"}],"created":"2024-10-23T12:17:35Z","active":"2024-10-25T23:08:17Z","content":"\u003Cp>Hi my name is Paola and I am from Italy I was diagnosed with brain vasculitis and I would like to know which is the best hospital in the USA for this matter because here in Italy I am trying to resolve my problem but after 4 years no good news. Someone can help me? Thank a lot to everybody \u003C/p>\u003Cp>\u003Cbr>\u003C/p>","reply_count":4,"url":"/groups/vasculitis-voices/discussion/af606e-pacs-brain-vasculitis/","is_followed":false,"privacy":"public","class":"disc","reactions":[{"type":"SUPPORT","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"},{"type":"THANKS","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"},{"type":"USEFUL","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"}],"__typename":"Post","files":[],"sticky":false,"experiment_id":null},{"id":"1028805643814177532","title":"Folliculitis","slug":"disc-cf0e0f-folliculitis","author":{"avatar":{"small":"/assets/images/you-small.png","__typename":"Avatar"},"friendship":null,"site_roles":[],"nickname":"VroniqueBastien","status":4,"__typename":"User"},"groups":[{"name_id":"vasculitis-voices","group_id":200321,"name":"Vasculitis Voices","topics":[{"id":3979,"name":"Symptoms","__typename":"Topic"}],"__typename":"Group"}],"created":"2024-10-16T14:52:34Z","active":"2024-10-21T17:55:00Z","content":"\u003Cp>Hi. I have recurrent folliculitis since one year. It's almost always synchronised with flare. At first the betaderm (cortisone lotion) treatment help. But it getting worse (more lesion, bigger) and when i'm on prednisone it disappear but come back as soon as i stop. How do you know if it's a normal folliculitis or one cause by the immune system. I have an appointement with a dermatologist in mid-november. Maybe they gonna do a biopsy on it. Thanks\u003C/p>","reply_count":1,"url":"/groups/vasculitis-voices/discussion/cf0e0f-folliculitis/","is_followed":false,"privacy":"public","class":"disc","reactions":[{"type":"SUPPORT","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"},{"type":"THANKS","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"},{"type":"USEFUL","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"}],"__typename":"Post","files":[],"sticky":false,"experiment_id":null},{"id":"6072256718140928856","title":"Grieving and craving the ‘healthy’ me.","slug":"disc-2539fa-grieving-and-craving-the-healthy-me","author":{"avatar":{"small":"/api/member/Laura_Theo/avatar/s","__typename":"Avatar"},"friendship":null,"site_roles":[],"nickname":"Laura_Theo","status":4,"__typename":"User"},"groups":[{"name_id":"vasculitis-voices","group_id":200321,"name":"Vasculitis Voices","topics":[{"id":3985,"name":"ANCA associated (MPA, GPA, EGPA)","__typename":"Topic"}],"__typename":"Group"}],"created":"2024-10-14T01:26:41Z","active":"2024-10-18T19:15:56Z","content":"\u003Cp>We all wish for things. It’s human nature. I’d always wished for a ‘normal’ family. My Nan was (thank goodness) normal. More than that, she was loving, caring supportive and my best pal. When she died I felt totally alone. Pregnant with my first child and due to get married, I was full of mixed emotions. I was used to doing most things on my own, my partner worked long shifts so appointments, DIY, school runs etc were left to me. I loved being a mum. I still do, but now it’s so much harder. I was the mum who had an immaculately clean house yet always had an open door for friends kids to come round for play dates. I’d go all out. Food, games, crafts and a listening ear for anyone who needed it. I would give my all, yes it was hard but rewarding & I loved my life. When Evie was 4 I gave birth to our second child George. He was a typical boy, she was a typical girl! Dresses & princesses Vs trains & cars. I was utterly content and couldn’t have felt happier. Then, when George was 4, I had a painful boil at the opening of my nose. It got bigger and so I made a doctors appointment. The GP confirmed it was staph a infection and put me on antibiotics. It was too late. Two days later it had spread to the inside of my nasal cavity and it had completely eaten away my septum. Various ENT appointments, creams etc made no difference and I was told nothing could be done. I then went on to have worsening nasal symptoms, carrying tissues and Vaseline around wherever I went. My face had completely changed. It wasn’t ‘me’ anymore. The old me was gone. After various other symptoms and appointments with my rheumatologist, I was finally diagnosed with GPA vasculitis. It’s affected every part of my life and accepting me as I am now is something I find difficult. I feel utter anger and frustration some days and just wish for more ‘good days.’ It’s a comfort to find this support on inspire.com through Instagram & I’m looking forward to relating with others. \u003C/p>","reply_count":3,"url":"/groups/vasculitis-voices/discussion/2539fa-grieving-and-craving-the-healthy-me/","is_followed":false,"privacy":"public","class":"disc","reactions":[{"type":"USEFUL","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"},{"type":"THANKS","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"},{"type":"SUPPORT","count":1,"reacted_by_me":false,"nicknames":["RebekahS1"],"__typename":"PostReactions"}],"__typename":"Post","files":[],"sticky":false,"experiment_id":null},{"id":"11625491915298829949","title":"Steroids","slug":"disc-560c5d-steroids","author":{"avatar":{"small":"/assets/images/you-small.png","__typename":"Avatar"},"friendship":null,"site_roles":[],"nickname":"Jay_Mc","status":4,"__typename":"User"},"groups":[{"name_id":"vasculitis-voices","group_id":200321,"name":"Vasculitis Voices","topics":[{"id":3980,"name":"Steroids","__typename":"Topic"}],"__typename":"Group"}],"created":"2024-10-13T20:13:56Z","active":"2024-11-18T23:18:05Z","content":"Hi all - I have been on steroids for about 8 months. While we are trying to get my dose lower and lower, I continue to struggle with side effects. I have gained about 30 pounds and am experiencing fairly significant hair loss. Wondering if anyone has ideas as to how to improve these symptoms?","reply_count":5,"url":"/groups/vasculitis-voices/discussion/560c5d-steroids/","is_followed":false,"privacy":"public","class":"disc","reactions":[{"type":"USEFUL","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"},{"type":"THANKS","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"},{"type":"SUPPORT","count":1,"reacted_by_me":false,"nicknames":["KirstyCol"],"__typename":"PostReactions"}],"__typename":"Post","files":[],"sticky":false,"experiment_id":null},{"id":"13988030025025600904","title":"Prednisone cause weight lost for me","slug":"disc-697375-prednisone-make-me-loose-weight","author":{"avatar":{"small":"/assets/images/you-small.png","__typename":"Avatar"},"friendship":null,"site_roles":[],"nickname":"VroniqueBastien","status":4,"__typename":"User"},"groups":[{"name_id":"vasculitis-voices","group_id":200321,"name":"Vasculitis Voices","topics":[{"id":3992,"name":"General","__typename":"Topic"}],"__typename":"Group"}],"created":"2024-10-07T01:09:51Z","active":"2024-10-08T12:51:00Z","content":"\u003Cp>Hi. I wonder if anyone have the same thing than me. On prednisone i'm my old self again. Happy, more energy, i am stronger, have more endurance, no cough or chest pain, less skin lesions and itchiness. And my bloathing, diarrhea stop anfld i loose weight. But when i stop the prednisone it's coming back. The doctors told me i'm not suppose to take prednisone on long term but i feel so good on it. I'm waiting for a specialist to finally diagnose me. I'm sure at 90% it's vasculitis. Is everybody have just bad side effect on prednisone instead of good one? Now i'm not able to work but if i need to work and wait many more years before they are able to test at the right time i surely gonna need prednisone all the time to keep going. \u003C/p>\u003Cp>\u003Cbr>\u003C/p>\u003Cp>Thanks\u003C/p>","reply_count":2,"url":"/groups/vasculitis-voices/discussion/697375-prednisone-make-me-loose-weight/","is_followed":false,"privacy":"public","class":"disc","reactions":[{"type":"SUPPORT","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"},{"type":"THANKS","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"},{"type":"USEFUL","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"}],"__typename":"Post","files":[],"sticky":false,"experiment_id":null},{"id":"17751736634609940429","title":"CSVV whole body affected","slug":"disc-9ba877-csvv-whole-body-affected","author":{"avatar":{"small":"/assets/images/you-small.png","__typename":"Avatar"},"friendship":null,"site_roles":[],"nickname":"Nina_W","status":4,"__typename":"User"},"groups":[{"name_id":"vasculitis-voices","group_id":200321,"name":"Vasculitis Voices","topics":[{"id":3979,"name":"Symptoms","__typename":"Topic"}],"__typename":"Group"}],"created":"2024-09-30T22:37:03Z","active":"2024-10-05T02:25:43Z","content":"\u003Cp>In August 2024, I was diagnosed with \u003Cspan>leukocytoclastic vasculitis (\u003C/span>CSVV) by a skin biopsy. However, from the onset, I have had symptoms that have affected my whole body and not just the skin. Labs look \"normal\" but I continue to have symptoms (painful muscles/joints, sinus issues, headaches, dizzy, GI involvement, lesions). Wondering if CSVV diagnosis could be secondary to something systemic yet to be discovered. Has anyone else experienced confusing results from testing? \u003C/p>","reply_count":2,"url":"/groups/vasculitis-voices/discussion/9ba877-csvv-whole-body-affected/","is_followed":false,"privacy":"public","class":"disc","reactions":[{"type":"SUPPORT","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"},{"type":"THANKS","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"},{"type":"USEFUL","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"}],"__typename":"Post","files":[],"sticky":false,"experiment_id":null},{"id":"14381746585852161033","title":"Echooo... Newly diagnosed need some wisdom to hear me","slug":"disc-4b6676-echooo-newly-diagnosed-need-some-wisdom-to-hear-me","author":{"avatar":{"small":"/assets/images/you-small.png","__typename":"Avatar"},"friendship":null,"site_roles":[],"nickname":"Jeremy-Numbfoot","status":4,"__typename":"User"},"groups":[{"name_id":"vasculitis-voices","group_id":200321,"name":"Vasculitis Voices","topics":[{"id":3985,"name":"ANCA associated (MPA, GPA, EGPA)","__typename":"Topic"}],"__typename":"Group"}],"created":"2024-09-28T06:20:56Z","active":"2024-10-03T16:07:04Z","content":"\u003Cp>Hello I'm Jeremy. I'm 47 diagnosed 8/21/24 w/ microscopic polyangina anca. That affects my ankles down tho toes nerves and muscle , it is also attacking my left hand ulnar nerve/muscle. I've lost maybe 30 % of muscle, maybe more/less. My feet are numb now. I've lost some nerves some may grow back. My pinky on left hand is useless right now, hand looks like hell. \u003C/p>\u003Cp> It's a diagnoses that's taken my trade from me. I built airplane refueling trucks. High rate of minor injuries dirt germs etc. Question is how careful do I really have to be? Obviously my injuries won't allow me to hold tools or be near injury hazards. But out in public, socially, in house?\u003C/p>\u003Cp> Should I consider getting disability and a work from home job? Any advice please. I have a good team of Dr.'s @ K.U.\u003C/p>\u003Cp> I'm a blue collar man with 30 grand worth of tools that are now almost useless and 27 years experience in the diesel industry. My feet are numb and my hand doesn't work like I wish. 6 months ago I was dancing on top of truck frames @ work. Well you know. \u003C/p>","reply_count":6,"url":"/groups/vasculitis-voices/discussion/4b6676-echooo-newly-diagnosed-need-some-wisdom-to-hear-me/","is_followed":false,"privacy":"public","class":"disc","reactions":[{"type":"SUPPORT","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"},{"type":"THANKS","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"},{"type":"USEFUL","count":0,"reacted_by_me":false,"nicknames":[],"__typename":"PostReactions"}],"__typename":"Post","files":[],"sticky":false,"experiment_id":null}]}}}</script></body></html>