Watts ANCA Vasculitis?

ANCA Vasculitis is a rare autoimmune condition in which the body’s immune system mistakenly attacks its own small blood vessels. This causes inflammation that can lead to damage in various organs — most commonly the kidneys, lungs, nerves, and skin. The type I’ve been diagnosed with is MPO-positive, which refers to the specific autoantibody involved (myeloperoxidase).

This diagnosis is still being worked up — so far, it’s been confirmed through multiple strongly positive blood tests (after years of negative results), but further investigations are ongoing. That includes kidney function tests, a brain MRI, CT angiogram, renal ultrasound, and possibly even nerve biopsies. So this page — like the condition itself — is a bit of a work in progress.

It’s very new territory for me, and not something I ever expected to be writing about — let alone living with. As more test results come in and we figure out the treatment plan, I’ll update this page to reflect the evolving reality.

🤕 Watts The Symptoms?

Because ANCA Vasculitis can affect multiple organ systems, the symptoms can vary — and they don’t always follow a neat pattern. In my case, some of the earlier signs were vague and easily attributed to other conditions: fevers, fatigue, nerve pain, high blood pressure spikes, strange visual symptoms, and periods of feeling “off” without a clear reason.

As things progressed, I started experiencing more obvious red flags, including:

• Fevers and chills that were extreme — sometimes triggering vomiting or full-body shaking
• Sharp chest pain and abnormal cardiac symptoms (which were initially dismissed as unrelated)
• Blood pressure surges and dizzy spells
• Worsening nerve-related pain and sensory issues
• Persistent fatigue beyond what I usually experience with my other conditions

Because vasculitis can creep up slowly, many of these symptoms were initially attributed to other diagnoses (like MCAS, EDS, POTS, or neuropathy). It wasn’t until things escalated — and multiple specialists started comparing notes — that the full picture started to come into focus.

💥 Watts Causing It?

ANCA Vasculitis is caused by the immune system mistakenly producing autoantibodies — specifically Anti-Neutrophil Cytoplasmic Antibodies (ANCAs). These antibodies target certain proteins inside white blood cells, and in MPO-positive vasculitis, the target is a protein called myeloperoxidase.

Once triggered, these rogue antibodies activate the immune system inappropriately, causing inflammation and damage to small and medium-sized blood vessels. This can reduce blood flow to vital organs and tissues, leading to the wide range of symptoms experienced with this condition.

No one fully understands what causes the immune system to go off-script like this. It may involve a mix of genetic predisposition, environmental triggers (like infections or toxins), and a dash of bad luck. What’s clear is that could have been prevented with lifestyle modification or preventative treatment — and once it starts, it doesn’t tend to fix itself without serious intervention.

🩺 Watts The Management Team?

These conditions don’t fall neatly under a single medical specialty, so management is spread across a multi-disciplinary team — often depending on which symptoms are flaring most at the time.

In my case, the team includes:

• Neurologist – for monitoring neuropathic symptoms, managing nerve pain, and overseeing neurological involvement
• Rheumatologist – for systemic involvement and connective tissue-related pain or inflammation
• Immunologist – for inflammatory and autoimmune contributors, particularly related to neuropathy
• Dermatologist – for skin complications linked to Raynaud’s flare-ups and peripheral nerve involvement
• Pain Specialist – for pharmacological oversight and strategies to manage persistent sensory pain
• GP – for ongoing symptom tracking, medication coordination, and referrals
• Physiotherapist and Exercise Physiologist – for mobility support, pacing strategies, and maintaining circulation through movement

As with many of my other conditions, the aim is to reduce flare-up frequency and intensity, support daily function, and maintain some stability.

🧩 Related Conditions

ANCA Vasculitis doesn’t exist in isolation — and it’s hard to untangle where one condition stops and another begins. Some of the symptoms overlap with other diagnoses I live with, and some conditions might be contributing factors or complicating the picture. These include:

Peripheral Neuropathy, Raynaud’s Disease & Restless Legs Syndrome (RLS)

• Complex Regional Pain Syndrome (CRPS) & Chronic Refractory Pain
• Ehlers-Danlos Syndrome (EDS)
• Eosinophilic Esophagitis (EoE)
• Mast Cell Activation Syndrome (MCAS), Hereditary Alpha Tryptasemia (HaT) & Allergies
• Migraine & Headaches
• Peripheral Neuropathy, Raynaud’s Disease, Restless Leg Syndrome (RLS)
• Postural Orthostatic Tachycardia Syndrome (POTS)
• Sphincter Of Oddi Dysfunction (SOD) & Irritable Bowel Syndrome (IBS)
• Tinnitus

…you can also head over to my blog — where I talk about what it’s like living with an immune system that can’t read the room, organs that ghost you, and specialists that play hot potato with your diagnosis. Sparkle. Swear. Smile. Survive.

You can also visit the Helpful Links page for resources and organisations I’ve found useful along the way.

Disclaimer:
I’m not a doctor — just someone with a lot of medical letters on my file and a few too many hospital wristbands. Everything shared on this site comes from my personal experience living with complex chronic conditions. It’s not medical advice, and it shouldn’t replace professional guidance. Always speak to your healthcare team before making any treatment decisions (especially if it involves sparkles, spreadsheets, or ice cream therapy).