When My EGPA Symptoms Flared, I Was Hesitant to Call My Doctor

When My EGPA Symptoms Flared, I Was Hesitant to Call My Doctor
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This week, my eosinophilic granulomatosis with polyangiitis (EGPA) decided to remind me that it had not gone away and was ever-present. I could feel my symptoms becoming more problematic. I tried to ignore them.

The peripheral neuropathy in my feet became more noticeable and interrupted my sleep. My asthma became harder to control, even with a minor increase in prednisone dosage. I noticed the slightest rash on my lower legs. My headaches became more frequent, and my fatigue was overwhelming.

I knew these were all signs that I should call my rheumatologist, but I hesitated. Why did I hesitate? Why did I resist calling for help?

I am a patient advocate. I understand that rapid response to any symptom increase is critical for an ANCA vasculitis patient. I preach about not ignoring your symptoms and seeking medical help if you notice any old or new ones. My brain knew it was time to call my doctor, but my heart wanted more time.

As a chronic illness patient, I have an excellent relationship with my team of doctors. I can email or call their offices, and they are responsive to my needs. Knowing this makes it more confusing as to why I hesitated to call my medical team to let them know about my new and increasing symptoms.

I believe the reasons I hesitated to notify my doctors about my possible flare are complex. Some of them may include the following:

Not wanting to cry wolf or waste my doctor’s time

Getting diagnosed with a rare, complex illness can sometimes take many years. More than one medical professional thought I was overreacting to my symptoms before my diagnosis. This makes me hesitate to call my doctors. I never want to be seen as sounding a false alarm.

My blood test results often come back within the normal range, yet sinister things are happening inside my body. I quickly forget that my doctor continually tells me that it’s essential to treat the patient, not the lab results.

Not wanting to admit I may be sick again

As an EGPA patient, I have good and bad days. I also have good and bad months. When my symptoms return, I don’t want to admit my good days and months are coming to an end. I want to ride the wave of feeling physically good and pretend that I don’t have a chronic illness. I think that if I ignore the signs and symptoms, my disease will magically disappear.

Not wanting to increase my medications or have additional testing

I have written previously about “white-coat fatigue,” which I experience often. I know a flare will mean more medical tests and procedures. These tests can become all-consuming. My doctor and I will need to reevaluate my medications and make changes. It usually means an increase in prednisone, and along with, all of the not-so-fun side effects. I like to avoid the mood swings, weight gain, night sweats, and body shakes that I experience due to prednisone.

I have dealt with EGPA for more than 14 years, and I still go through this self-doubt and flare denial. My brain tells me to be logical, while my heart tells me that maybe this time it’s not a flare. It took a week for my brain to win over my heart this time.

I did eventually contact my doctor, and yes, I am flaring. I am increasing my prednisone and other medications to get things under control. Despite my heart trying to tell me otherwise, I caught the flare quickly enough that we can treat it before it does damage to any of my organs.

What can I learn from this hesitation to admit I was flaring? I learned to listen to my brain. I realized that I am never wasting my doctors’ time, and they are happy to talk to me, even if I am not flaring. I learned that a prednisone taper is better than organ damage.

I know that with EGPA, I will continue to have good days and bad days, and if I ignore a flare, I may end up with many more bad days. I also learned that I am human, and I shouldn’t be so hard on myself for wanting to be healthy and not flaring. I learned to love my brain, my heart, and all of myself.

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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.

Suzanne, a columnist for ANCA Vasculitis News, speaks at vasculitis conferences and is on the board of the Vasculitis Foundation. Diagnosed at age 40 with eosinophilic granulomatosis with polyangiitis (EGPA), she is passionate about educating and advocating for patients living with vasculitis. She lives among the redwoods in California and enjoys spending time with her horses, chickens, and other transitory wildlife. Suzanne hopes that her column, “Veni, Vidi, Vascie,” will inspire readers to realize that living with a rare illness does not end one’s dreams — rather, it makes those dreams evolve.
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Suzanne, a columnist for ANCA Vasculitis News, speaks at vasculitis conferences and is on the board of the Vasculitis Foundation. Diagnosed at age 40 with eosinophilic granulomatosis with polyangiitis (EGPA), she is passionate about educating and advocating for patients living with vasculitis. She lives among the redwoods in California and enjoys spending time with her horses, chickens, and other transitory wildlife. Suzanne hopes that her column, “Veni, Vidi, Vascie,” will inspire readers to realize that living with a rare illness does not end one’s dreams — rather, it makes those dreams evolve.
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6 comments

  1. Michelle Hendle says:

    Hi Suzanne, I really appreciated your column. I was diagnosed with Wegener’s granulomatous (GPA), 10 years ago in my early forties. I was energetic, fit and extremely independent. The ups and downs of suffering from a chronic disease and the continual battle of fatigue is sometimes overwhelming. Knowing others face these same challenges gives me courage. Thank you.

    • Suzanne DePaolis says:

      It’s important to know you are not alone. The fatigue is a constant reminder that my body no longer functions as well as a healthy person’s. Thank you for taking the time and writing your comment, and remember that you ARE courageous!

  2. Denise Humphrey says:

    I am so pleased to read your article. I could not have said it any better. I feel exactly the same. I was diagnosed with GPA 18mos ago. It was horrible experience and I am finally feeling normal again. I am scared of my future. Thank you for helpnig

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