A medical second opinion can greatly benefit those with vasculitis

When people ask about your bucket list, you probably think about travel, adventure, or experiences you’ve always wanted to have. But here’s something you might not have considered adding to the list: getting a medical second opinion, especially if you’re living with a rare disease. I’ve found it incredibly helpful.

Many of us with ANCA vasculitis see doctors who are not well versed in our disease, or we simply don’t have the quality of life we want. When that happens, I gather all the information I can, go through it with my wife, Pam, and then make adjustments with my doctor if needed.

Think about it this way: When your air conditioner breaks or your roof needs replacing, most people get more than one quote. Why? Because every contractor sees things differently. Some identify issues that others miss. That variety gives you confidence that you’re making the best decision — and our health deserves the same diligence. Yet we rarely engage in this opportunity often covered by health insurance.

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Oh, the doctors I see as part of my ANCA vasculitis treatment

The first time I sought a medical second opinion for my eosinophilic granulomatosis with polyangiitis (EGPA) was after my doctor moved away, and none of my treatments were working. It was frustrating and scary. I felt like I was running out of options. Since then, I have maintained a terrific community rheumatologist near our home and have the option to do telehealth visits with a doctor from the Cleveland Clinic. Perfection!

Sometimes it can feel like I’m “cheating” on my doctor or suggesting they’re not good enough — neither of which is true. But truth be told, unless you’re feeling as good as you possibly can and your quality of life is high, I believe you owe it to yourself to explore what else might be out there.

Moreover, many doctors don’t know about the latest treatments or drug trials that might be of value. Two of the newest treatment options — Tavneos (avacopan), approved for granulomatosis with polyangiitis and microscopic polyangiitis, and Fasenra (benralizumab), approved for EGPA — are perfect examples. These medications have not been added to the clinical guidelines that many general rheumatologists reference for treatment. A medical second opinion or a chart review by an expert can add options that our doctor doesn’t know about.

Don’t be afraid to ask for help

At first, the idea of travel to a major medical center for a second opinion felt daunting, considering the cost, the logistics, and the energy it takes to make it happen. But sometimes, it really is worth the effort.

One of the biggest hurdles can be cost. For Pam and me, that’s where our community came through. A friend suggested we start a GoFundMe, and at first, we resisted. Like many in the rare disease world, we’re fiercely independent and used to handling things on our own.

But something our friend said stuck: “I don’t have any other way to help you. This is one way I can.” It was a powerful reminder that people want to support us — and sometimes they just need a way to do it.

We didn’t even set up the GoFundMe ourselves; my mom took the lead. She shared it with her network, and they shared it with theirs. It was humbling, a little uncomfortable, and incredibly moving. The support we received helped us get to the Cleveland Clinic not just once, but multiple times. And those visits changed the course of my EGPA treatment. I’ll be forever grateful.

Here are a few situations where you might consider getting a second opinion or engaging in a chart review by an expert:

• Your current doctor is unsure how to proceed or seems to be running out of options.
• You’re experiencing severe side effects or allergic reactions to medications.
• Your doctor is unfamiliar with newer treatment options or isn’t open to discussing them.
• Your symptoms don’t feel well-managed, and your quality of life is low.

If you’re like me and my wife, you’ve developed a fierce sense of independence — because you had to. But accepting help, whether it’s financial or emotional, isn’t weakness. In fact, it gives others the gift of being able to do something in a situation that often feels helpless.

So if you’re considering a second opinion but feel stuck — financially, logistically, emotionally — don’t be afraid to ask for help. Even a kind email or text message from a friend can be the encouragement you need. If you want to learn more, check out a recent episode of the “Rare Candor” podcast my wife and I host called “More Information Please: A Second Opinion Can Change Your Life.” The Eosinophilic and Rare Disease Cooperative also hosted a live session called “Do You Have the Best Possible Treatment Plan in Place?”

No one ever regrets getting more information about their health. A second opinion could confirm your current treatment plan, or it could open up new possibilities. Either way, it’s a win.

So maybe, just maybe, it’s time to put “get a second opinion” on your bucket list. I mean, it’s adventurous, and it just might change your life.

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.