Monitoring our kidney health is crucial with ANCA vasculitis

Living with ANCA vasculitis asks more of us than most people understand. It demands we become experts in our own bodies, pay attention to small shifts, and make decisions that most people never think twice about. And when your kidneys are part of the story, everything can feel even more delicate.

That’s exactly why the Eosinophilic and Rare Disease Cooperative (ERDC) gathered a group of patients, care partners, and physicians to create the Kidney Involvement HEAT Kit, a practical and compassionate guide to help you understand what matters, what’s urgent, and what deserves a call to your care team. (HEAT stands for Hospital Emergency Advocacy and Treatment.)

These resources weren’t pulled from a medical textbook. They were shaped by the real-life experiences of people living with ANCA vasculitis and navigating this terrain every day.

With the help of Amgen — the company that markets Tavneos (avacopan) in the U.S., a therapy that has proven effective in improving kidney function — ERDC was able to print and distribute the Kidney Involvement page to everyone who ordered a HEAT Kit.

(If you have granulomatosis with polyangiitis or microscopic polyangiitis, you can order a free kit from the ANCA Resource Hub. If you have eosinophilic granulomatosis with polyangiitis, you can order yours on the ERDC website.)

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Understanding kidney involvement in vasculitis

Kidney issues in ANCA vasculitis can show up in surprising ways. We often expect kidney disease to come with pain or obvious symptoms — but for many of us, the earliest signs are subtle or show up in unexpected places.

For me, it was sudden, explosive high blood pressure. I had never had blood pressure issues in my life. And then, before my diagnosis, it shot up to 220/116 mmHg out of nowhere, with no warning. I’m now on three blood pressure medications, and while I don’t have other kidney complications, the scarring I do have is a reminder that vasculitis is a systemic disease — and often silent.

Others in our community experience very different kidney symptoms: sudden swelling, changes in urine, intense fatigue, nausea, or shifts in labs long before they feel anything at all. It’s essential that we recognize changes early, identify what requires urgent attention, and develop habits that enable us to track patterns over time. This is on the new HEAT Kit card, but it should also be a regular part of conversations with our doctors.

The first page of the kidney card outlines what to do and when. Symptoms that require a 911 call are different from those that require you to call your provider or simply monitor them. This card is not an absolute, but it can help you decide when action is needed. If you are like me, it can be overwhelming to live in a body with vasculitis. It can be hard to know when to call someone about your symptoms.

The second page lists labs that can indicate kidney involvement and what changes may mean. You don’t have to memorize the numbers; you just need to know what trends look like. With kidney disease, trends tell the story. That’s why it’s important to track your creatinine, estimated glomerular filtration rate, urine findings, blood pressure, weight, and inflammation markers over time. One result alone rarely tells the whole truth. But three results over three weeks can reveal a pattern that helps your team treat you earlier and more effectively.

Whether kidney involvement is central to your vasculitis or something you’re loosely monitoring, it matters. The Vasculitis Foundation recently held a webinar called “What You Need to Know About the Kidneys and Vasculitis.” You might want to check it out, as the topic is relevant to your safety, long-term health, and peace of mind. It matters because vasculitis doesn’t operate in isolation; it is systemic, unpredictable, and requires us to stay engaged with our care in very real ways.

That’s why these resources exist — not to frighten you, but to prepare you. Not to overwhelm you, but to empower you. And not to make you memorize symptoms or lab values, but to give you tools to help you understand what’s happening in your body and be able to act early when something shifts. When it comes to kidney health in ANCA vasculitis, early awareness and consistent tracking can truly change the story.

Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.