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It’s Not You, It’s Not Me. It’s Prednisone.

There is a lot of emotion when the word “Prednisone” is heard among those living with chronic illness. Chances are we’ve been there; we’ve experienced the changes to our bodies, we’ve seen what it does to our facial features & we know how it affects us mentally.

My life has not been the same since I started on Prednisone

I’ve been on Prednisone a good part of my life. When I was young, I was on it constantly for asthma attacks. At age 16, I was introduced to what I call “satan’s tic tacs” and my life truly hasn’t been the same. But it’s a necessary evil.

Essentially what Prednisone does for patients with immune-mediated illnesses is this: “Inflammation is the body’s natural response to anything it considers harmful. When the immune system identifies a harmful agent, it releases chemicals which cause tissues to swell, and allow larger immune cells closer access to the site of an injury or infection.”1

Manic and lack of sleep caused by Prednisone

I have several autoimmune conditions. So Prednisone has been frienemies for years. But then this year something happened to me during a hospitalization. I went manic from the IV steroids and hadn’t slept for 6 nights. I was miserable and my body wouldn’t let me relax because the Prednisone, in addition to my failing mental health, made things the worst. I was at the end of my rope altogether.

I have been sweaty and angry before on Prednisone. I had never been manic like this ever before. Sitting down for 10 seconds and doing laps in the hallway until the nurses had to walk me into my room and tell me to relax. And then my sleep and my anti-anxiety medication did nothing.

I feel like I’m constantly out of breath but the exercise never takes place. My heart rate is up, but I didn’t run up a set of stairs. I didn’t even run in place to get myself exhausted. I just simply am. But at the same time, I’m cripplingly awake.

Learning to speak up when something isn’t right

I was lucky in that my nurses saw the manic and scared state I was in and I was thankfully taken off the steroids for a bit. Part of this experience has given me more of a voice to speak up when something isn’t right and because I did, I likely won’t be taking any more Prednisone for the rest of my life, hopefully.

What has been your results with Corticosteroids? Have any of you experienced something like this with Prednisone?

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

  1. Eustice, C. (2019, March 12). How to Use Prednisone Safely. Retrieved from
  2. Eustice, C. (2019, May 16). Arthritis Medications Overview. Retrieved from
  3. Harati, Y. (1979). Prednisone Use in Concurrent Autoimmune Diseases. Archives of Neurology, 36(2), 103. doi:10.1001/archneur.1979.00500380073009


  • thedancingcrohnie moderator
    3 months ago

    Oh Lordy. Prednisone is one of those treatments that make my hair stand up. I had the worst experiences while I was on it! My mind was going a thousand minutes, I couldn’t sleep, my face ballooned, I was constantly hungry, I was in the worst moods at all times, my heart was constantly racing, my knees swelled up, my belly distended outward. I could go on and on. I never want to be on it ever again!

    Always dancing,
    Elizabeth (team member)

  • Kelly C (#purpleproject) moderator author
    3 months ago

    I’m so glad that I have been completely honest with my care team & saying no more IV steroids, ever. It’s just too dangerous with my mental health presdispositions. And this is not not a decision that I made lightly.

    Going through this was really, really tough. And I hope that the next time I should need steroids, that something alternative can take it’s place. Because I have no time for that anymore!

    Kelly, Team Member

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