Increasing my prednisone dose brought a slew of side effects

Note: This column describes the author’s own experiences with prednisone. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

Current situation: I’m sitting in bed eating potato chips and drinking ice-cold ginger ale while my husband is fast asleep next to me.

I bet you’re wondering how I got so fabulous. Some might say this is living the dream. In one sense, I agree, but the reason isn’t so glamorous: prednisone.

I just got home after spending nearly three weeks in the hospital, filled to the brim with prednisone. At first, I was given a moderate dose for my shortness of breath. But because I had a double-lung transplant eight years ago, and we weren’t sure what caused the change in my breathing, my doctors decided to triple the dose. They wanted to be extra cautious and protect my lungs from possible rejection.

As my dose skyrocketed, I could feel the adrenaline coursing through my veins. It was as if I were leaving a rock concert, my body still buzzing from the booming music and energy of the crowd. Except I was in a hospital room, with Solu-Medrol (methylprednisolone) being infused via my port-a-cath, leaving my entire body pulsating and my mind racing a mile per minute.

All the side effects of steroids

Prednisone suppresses my immune system even more than it already is. It sends my blood sugar into oblivion, requiring more insulin than I’ve ever needed to stay regulated. Pain crashes through every joint, bone, and muscle, causing me to hobble along. I’m unable to find a comfortable position to sit or lie down.

This sleep thief never lets my mind or body relax. Over the past few weeks, I logged an average of 20 minutes of REM, or rapid eye movement, sleep per night, often sleeping between three and five hours total. Weariness sets in, but prednisone doesn’t care.

“‘Roid rage” is a real thing. Steroids turn me into somebody I’m not: I snap at stupid things, I’m quickly triggered, and I constantly carry a low level of anger. My tongue is sharp when prednisone takes over, and I feel so disconnected, wondering where the heck I went and what took over my brain.

Back to the chips, though. I’m nauseous from high doses of prednisone, which wreck my gastrointestinal system, but I’m also starving and want to eat everything in sight. That’s not unusual for someone like me with cystic fibrosis, and I’ve worked really hard to maintain a healthy diet. But all bets are off when I’m on prednisone.

Vanity isn’t an admirable trait, but it’s tough to ignore how steroids affect my appearance. They make me bloated and give me that round “moon face” look. Because I’m swollen everywhere, I feel like one of those squishy toys that are super fluffy. Further adding to my discomfort is the fact that my double chin is out in full swing.

The emotional roller coaster of ‘roids doesn’t help my mental health. Combined with the effects of sleep deprivation, I become highly and uncontrollably emotional. Tears flow for silly reasons, and small matters feel like they’re larger than life. In the past few weeks, I’ve laughed and cried simultaneously more times than I’d care to admit.

Prednisone is one of my anti-rejection medications, and thankfully, I’ve almost tapered down to my usual daily maintenance dose. The drug may be a constant companion on my transplant journey, but episodes like these remind me of all the ways it wreaks havoc on me. For now, I’ll continue searching for my sanity in bags of chips until I recover from this wild ‘roid ride.

Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.