Preparing for surgery with ANCA vasculitis is a team effort

As I’ve been sharing, I’m preparing for a hip replacement. And, as is often the case with ANCA vasculitis, nothing about this process has been simple or straightforward. After a thoughtful and thorough conversation with the pre-surgery team, we made the decision to move my surgery back.

Why should you care?

Because this experience is a powerful reminder of what good pre-surgical planning can look like — and how important it is for those of us with ANCA vasculitis to advocate for careful coordination, especially when immune-suppressing treatments are involved.

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From the moment the pre-surgery nurse practitioner walked in, I knew this visit would be different. She told me she had reviewed my medical record ahead of time. That alone felt remarkable. Then she said something even more surprising: When she realized I had a rare disease — eosinophilic granulomatosis with polyangiitis, or EGPA — she took time to familiarize herself with the condition and the treatments I’m on.

That level of preparation should be standard, but many of us know it often isn’t. It mattered deeply, because the conversation that followed required nuance, trade-offs, and shared decision making.

The real balancing act: Disease control vs. surgical risk

For people with ANCA vasculitis, surgery isn’t just about the procedure itself. It’s about how immune-suppressing therapies interact with healing, infection risk, and disease control.

In my case, the discussion centered on timing my immunosuppressant, Fasenra (benralizumab), so that:

• I would be at the very end of my treatment cycle going into surgery
• I would wait a minimum of two weeks after surgery before restarting treatment

That plan means I will have to delay my Fasenra by at least two weeks. I know I will likely feel it. I expect symptoms.

But here’s the hard truth: A flare of EGPA, while serious, is far less dangerous than an infection in a newly implanted joint. A post-surgical joint infection can become a lifelong complication, requiring repeat surgeries, prolonged antibiotics, and lasting disability. Once bacteria reach a prosthetic joint, the consequences can be devastating.

This is what “the best of two bad options” looks like.

To put this into perspective for others: If you are on a medication like rituximab that’s administered every six months, a comparable adjustment would be a three-month delay. These decisions are not theoretical. They have real, physical consequences — and they deserve careful consideration.

Why coordination and advocacy are essential

This experience reinforced several lessons that apply to all of us with ANCA vasculitis:

• Your surgical team must fully understand your disease and treatments. If they don’t, ask — politely but firmly — that they consult with your rheumatologist, nephrologist, pulmonologist, or other specialists. And if they do not do that, in my humble opinion, perhaps a new surgeon is in order!
• Timing matters. Immune suppression, wound healing, and infection risk must be weighed alongside your vasculitis treatment, not in isolation.
• You are part of the care team. You have an equal voice. They are medical experts, but you are a living expert. Ask questions. Take notes. Bring a care partner, spouse, or trusted loved one to appointments. This is not a time to do it alone. Another set of ears can make an enormous difference.
• Shared decision making is critical. There is rarely a perfect choice. The goal is to understand the risks on both sides and choose the path that minimizes long-term harm.

The takeaway

Surgery with ANCA vasculitis requires more planning, more coordination, and more honest conversations than most people realize. When done well, it can prevent complications that far outweigh the discomfort of a temporary treatment delay.

If you’re facing surgery, advocate for yourself. Make sure every provider is fully informed. Loop in your specialists. Involve your care partner.

Sometimes, the safest path forward is the one that takes a little longer. So, in my calendar, I use a pencil with an eraser.

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.