My Steroid Story

Let’s talk steroids and NMO. When I was diagnosed in 2017, I was at a hospital with doctors that didn’t know much about NMO, let alone MOG.

Newly diagnosed with NMO? Here come the steroids

When I originally went to the emergency room, I didn't have insurance. I was a young teenager and thought I would never need it because I was so healthy.

I felt that due to my insurance issues, things were taking a lot longer to get approved because I had no prior history of any sickness.

My doctors were very confused about what course of treatment to give me. When I was first diagnosed with NMOSD, they wanted to treat me with rituximab. I remember sitting in the hospital and doctors explaining the disease to me and what medications I'd have to take. The emergency course of treatment, while we were trying to figure out my main preventative, was prednisone. (After receiving the diagnosis of NMOSD, I was still on rituximab, which made me a lot worse.)

Prednisone for NMO: A common steroid

Prednisone was the steroid for NMO that we had a long conversation about. I have the recording of doctors giving me the warning signs of the effects of prednisone. I was on high-dose steroids for a year. I never thought I would actually have the side effect symptoms that I was so worried about.

The side effects

I blew up like a balloon, which my small frame couldn’t handle. It gave me a lot of bone issues over the past couple of years. I’ve had a sore shoulder that never seemed to get better. Just last year, it was the worst shoulder pain I’d ever felt in my life.

Begging to be heard by my doctors

I begged doctors to give me X-rays because I knew something didn’t feel right. Just like many times before, I was assured that I was OK, but I still pushed for the x-rays. I finally had x-rays done on both of my shoulders and both of my hips.

Steroids contributing to avascular necrosis

That’s when I got the news that I had avascular necrosis in my right shoulder. I quickly googled what it was. After reading the definition, I remembered our conversation when I was first diagnosed. Avascular necrosis is a disease of the bone where the cells of the bone die because it doesn’t get enough blood supply. According to the National Library of Medicine, the use of chemotherapy (a.k.a. the prednisone for me) is a risk factor for developing avascular necrosis ¹. Eventually, the bone could collapse.

NMO has been very painful for me and has been progressive for several years. The only source of treatment was to have a shoulder replacement. That is still the case. However, my doctors are still trying to figure out a way to do this for me.

Seeing specialist doctors

I saw an orthopedic specialist and a surgeon, and I am quickly progressing. That means the pain is more frequent and daily. My shoulder clicks and pops, and sometimes it simply slides out of the socket since my right side is my dominant side. I struggle to do simple things that I love to do, such as drawing and painting. Even sitting up or laying on my side has been so painful and difficult.

New pain in my other shoulder

As I adjusted to my new reality with NMO, I realized about five months later that I was starting to have the same pains in my left shoulder. I wasted no time and asked the doctor to order more X-rays for all my joints. A few weeks ago, I was given the news that not only had the left shoulder progressed substantially, but I now have avian in my left shoulder and right hip.

Coming to terms

This is all happened within the last six months. To think I’m going to need three replacements before the age of 30 is something that I’m still struggling with. I'm seeking different sources of treatment and therapy options to prolong this disease and looking to participate in trials that are working to rebuild my shoulder instead of doing a total replacement.

Lessons from the steroids

I had the choice - let my NMOSD attack take over my body and possibly my life, or take the steroids for NMO that would save me for the time being. This is not to stray you away from taking prednisone for NMO, but to know that knowledge is key when it comes to medication. Always ask questions about symptoms and risks. Having this discussion can minimize a lot of after-effects.

Be your own advocate and speak up if you have reservations about treatment.