Tell us about your symptoms and treatment experience. Take our survey here.

Collage with ear wax coming out of an ear, legs standing on a scale, hands holding pills, and acne on a face

Steroids and What They Do To Me

As NMO warriors, we need medications when we have flare ups or attacks or whatever you want to call them. These medications are used to try and help fight these random unwanted experiences to make us better and reverse any damage that's been done. With each medication comes a consequence of side effects to the body, mind, and soul. What follows will be some of my own personal feelings about steroid treatments.

My experience with steroids

Steroids "are the devil," as Kathy Bates would say in one of my favorite Adam Sandler movies, The Waterboy. Not because my body is now immune to them, but for what they do to me. With each flare up I've been given liquid steroids in the hospital and then a big bottle of pills to hunker down with. Here's what they did to me, my body, my mental state, my ex, my friends, and family. Yes, a steroid really changed me and the people in my life that much.

My body's just changed

Since taking steroids, my body has never been the same. The longest I was ever on them was for a year. My skin has become more oily and acne break outs are more frequent, which is an issue I thought I'd grown out of when I was a teenager. My ear wax has multiplied by five. As gross as it is, it would accumulate so much at times that it would ball up and fall out of my ears, which I cleaned in the morning and at night.

Let's talk about weight

My weight has been the biggest struggle when it comes to my body, and it's the change that has put me into many bouts of depressions. The hunger I experience when I take steroids is ridiculous. Anything I eat would stick to me and the pounds would keep on coming. Before steroids I was a good, healthy 130 pounds for a guy that was 5’7”. With each passing flare up I’d go up and up. I got up to 250 pounds, a weight I never imagined I’d be. At this point in time it’s still a struggle, but I'm back down to 215.

I changed as a person

Now for my mental state: it's affected myself and everyone around me. My mood swings were out of control. One minute I was a bright and happy person and then I became the many different curse words that I was called. I deserved them all. Every single one. I would say some of the most hurtful things to the people I love. Other days I’d cry, scream, and be angry for no reason, or because of my situation. Overall, I wasn’t pleasant to be around. Thankfully a few people stuck around and knew it was the steroids. I still feel bad to this day about how I acted and I pray I never have to be on them again.

I don't think they're right for me, but that doesn't mean they're not right for you

Overall I’m thankful for them when they worked. Once they stopped working and my body became somewhat immune to them, I never wanted to use them again. Going through all of that stress and pain of being on them took a lot out of me and from me. They may be great for some but for me, they're not my choice of treatment. I wish I knew then what I know now. Everyone’s different and everyone’s body reacts differently. So please talk with your doctor about any concerns or questions you may have if it’s brought up to you.

What has your experience with steroids been? Share with us in the comments

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Neuromyelitis-Optica.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

Are you an artist with NMOSD?