When Long-term Corticosteroid Treatment Lands You in the ‘Predni-zone’
“You are about to enter another dimension. A dimension not only of sight and sound, but of mind. A journey into a not-so-wondrous land of side effects. … Next stop: the ‘predni-zone.'”
I have been living in the “predni-zone” for more than 14 years. In eosinophilic granulomatosis with polyangiitis (EGPA), the corticosteroid prednisone is used for its immune- and inflammatory-suppressing properties. It has helped me to breathe and to keep my EGPA quiet.
But it also has changed my body shape and caused lifelong side effects that I must now endure. I am grateful for the medication, which has lowered inflammation and saved my life on many occasions, but I also hate it for the changes it has caused my mind and body.
When I received my first prescription of it because of suspected cough-variant asthma in 2006, it was like a magic pill. After months of having a constant cough and shortness of breath, I found that prednisone made my breathing easier and gave me a sudden burst of energy. It even eliminated purpura on my upper legs.
At the time, I didn’t care about its side effects, I was just happy I could take deep breaths again.
I also found myself staying up all night to clean my house and bake Rice Krispies Treats. At first, I didn’t realize prednisone had caused my increased energy and hunger. My husband was happy I had the energy to clean the house, but he didn’t appreciate the shin bruises he got from tripping over the furniture I moved every night.
At my next doctor’s appointment, I happily announced that I thought prednisone had cured me. I could breathe, my rash disappeared, and I had lots of energy. The doctor flashed me an all-knowing smile and began tapering my medication. I naively thought I could stay on prednisone and everything would be fine.
By my fourth month on the corticosteroid, I realized I had entered what I call the “predni-zone.” It felt like an altered reality. I felt every emotion with such intensity that I began to question my sanity. But every time we tried to taper and lower the dose, my symptoms returned.
As my doctor worked diligently to diagnose me, I had to deal with the drug’s powerful side effects. I had difficulty falling asleep, my mood shifts were extreme, I was constantly sweating, even in the winter cold, and my hands shook so much that my family noticed when I started hiding broken dishware.
When I reached the milestone of one year on the drug, more severe side effects began to affect my health. The eye doctor noted an increase in eye pressure, my blood sugar was increasing, and I had gained 40 pounds. My face was unrecognizable from swelling, and I was taking two additional medications to combat constant heartburn.
Meanwhile, doctors continued adding other immune-suppressing medicines while trying to taper the prednisone. Yet at the time, I didn’t realize I eventually would have to make peace with the possibility of never leaving this so-called predni-zone.
It took me a decade to accept my dependence on it. I eventually realized that my health suffered every time I tried to stop taking it. I would recover from each deterioration for months, yet I always ended up back on prednisone.
I now have adrenal insufficiency, so the drug has become an essential part of keeping me alive and well. Although I never would have chosen this fate, it’s where I find myself, and I’m fortunate it was invented.
If you find yourself in the “predni-zone,” get educated about the drug’s side effects, and seek medical help when appropriate. It can cause severe mood changes, so reach out to your medical team for assistance as needed. Remember, you are not alone.
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.