Nobody warned me about oral health problems related to vasculitis

Of all the things I expected ANCA vasculitis to take from me, my mouth was not on the list. But here we are.

My gums are perpetually inflamed and, more often than not, sore. I figured I was doing something wrong because my doctors didn’t acknowledge how the disease can affect the mouth. Living with a chronic illness, I get so used to blaming myself that it becomes a reflex.

Let me tell you what has actually helped me, because I wish someone had shared these tips with me sooner. And because going to the dentist is never joyful!

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My dermatologist prescribed pilocarpine daily and fluconazole weekly to get my mouth sores under control, and the combination has made a real difference. My primary care doctor prescribed “magic mouthwash” for the truly bad stretches, the kind of sores that make me dread eating.

But some of the best advice I’ve gotten came from an unexpected place: my new dental assistant. She told me about an alcohol-free mouthwash called Parodontax that doesn’t burn and actually calms my gums instead of setting them on fire. This one was a small revelation for me.

She also recommended a Waterpik. It took me a while to get the hang of it, and there was a stretch when I sprayed water all over myself and most of the bathroom. But once I found my rhythm, it felt wonderful on my gums, and it’s helped a lot.

Here’s the best part: My dental assistant looked at my gums, told me plainly that they were inflamed, and then said something I needed to hear. She explained that everyone has some inflammation, but those of us with autoimmune disease carry it throughout our bodies — including in our gums — at much higher levels than people without these conditions. Validation goes a long way!

I could have cried. I am so hard on myself that when something goes wrong in my body, my first instinct is to feel like I’ve failed. To have a health professional look at me and say it’s not my fault is a gift. The effects of being truly heard and having my experience validated are remarkable. If you work in healthcare, please do more of that.

If you have vasculitis, you may run into doctors who tell you your dental troubles have nothing to do with your disease. But you know your own body. You know whether these issues were happening before you got sick. I did not have any mouth problems before vasculitis.

My last dentist understood what steroids can do to your teeth, your gums, and your whole life. She once said, “Prednisone is not compatible with sane living.” I laughed out loud and wanted to hug her, because finally someone said it.

Between prednisone’s effects on oral health and the systemic inflammation caused by vasculitis, no one will convince me that my mouth isn’t part of the picture. It’s all connected.

So take care of your mouth. Find a dentist who listens. Consider gum-friendly, alcohol-free rinses available over the counter. Be patient with the Waterpik if you choose to try it. What my doctors prescribed for me may not be the answer for you; that’s a conversation to have with your own care team. But please be gentle with yourself. This is not a personal failing; it’s our disease doing what it does so well. Our symptoms are plentiful and systemic!

Your mouth is part of you. And all of you deserves care.

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.