My Steroid Journey

My blog is often written as a record for me to look back on my medical experience, less about my feelings, more of a practical account. This is one of those times. I also hope to offer insights to those who may be experiencing similar conditions (and their curious friends and family).

I’m learning about steroids these days. I’ve been off and on steroids for about seven weeks. Manly I’m learning how widespread it’s use is and how little I knew or paid attention to it.

I know there are many types of steroids. It can start with babies and kids. Children with asthma or other breathing difficulties use steroids and it can continue through adulthood. It also helps with inflammation throughout other parts of the body. It gives relief to so many people. But it can also bring a host of side effects.

I’m grateful for family and friends who shared their experiences and insights.

What I know for sure is that everyone’s story can be different. Here’s how it’s impacted me.

• The type of steroid I’m given is Dexamethasone.

• I’m on round 4 of my steroid use. Although each week during my chemo infusion they gave me steroids, along with other drugs.

• During chemo, it’s supposed to help prevent an allergic reaction to the chemo and also helps with nausea. Some people experience side effects from steroids during chemo, but I didn’t notice any issues during this once a week dosage.

• After 12 weeks of chemo, I developed pulmonary toxicity or chemo induced pneumonits where my lungs became inflamed causing me to cough incessantly, tiredness and labored breathing. After 4 weeks of being misdiagnosed, I was given my first round of steroids.

• This 1st round was for 5 days only. After about 8 hours on my first pill, my symptoms went away about 90%.

• One day after stopping the pills, my cough returned.

• So, we did this for two more rounds. Each time, I was on for 5 days. Each time I went off the steroids my symptoms came back.

• Now I’m on my 4th round. My doctor double the dosage and tripled the amount of time that I’m on it. They hope that what is causing the inflammation will be healed and I won’t have to go back.

• On day 10 I go for a CT Scan. The goal is to see if my lungs are inflamed. I sure hope not.

It could impact whether or not I have surgery two days later.

If the steroids are not working, I’ll be referred to a pulmonologist who can hopefully get to the bottom of the pneumonitis.

I’m still researching and trying to understand how steroids helps my particular condition. The chemo attacked my lungs and caused inflammation. The Dexamethasone reduces the inflammation, but does it heal? I have read a little that it does repair. If my symptoms came back each time I was taken off, was the steroid simply acting as a reducer? I’ve been off chemo for about a month, so maybe just not having chemo in my system allows my lungs to heal better with the steroids.

Another concern I have is my GERD (acid reflux). It’s been really, really bad with the steroids, which is common. The last few days, it’s been eight hours or more of unpleasantness – hard stomach, acid feeling in my throat and chest. I can’t get comfortable. I hope as I slowly reduce my intake of the steroids, I’m on day 8 and every few days my dosage is less.