Why I Won’t Be Taking Prednisone Ever Again

Content note: This article includes content related to suicide, which may be upsetting for some readers. For more information on mental health resources, click here.

Most people living with inflammatory bowel disease will have experienced taking prednisone/prednisolone at some point. I’ll be referring to them as pred from now on, for ease. Many of us appreciate how quickly pred can get a flare under control, but it doesn’t have the nickname "devil's tic tacs" for nothing!

As with all treatment options and side effects, everyone’s different. Some may have little to no problems. Others might have a really rough time.

Common pred side effect & complaints

The list of side effects is extensive, so we can’t cover them all! Here are some of the most common side effect complaints I see in the #IBDSuperHeroes Facebook group and wider community:

Mood swings

You can go from pure elation, to extreme anger or crying within seconds. Why? Maybe it was something as small as dropping the TV remote! Some of us may refer to this as "roid rage."

Symptoms vary from person to person. Pred may cause someone to feel emotionally unstable in general, triggering issues such as personality changes, confusion, anxiety, paranoia, and irritability. It can also lead to other mental disorders such as delusions, hallucinations, and schizophrenia.

Weight gain

Increased appetite is also a side effect of pred, but sometimes the weight gain can also be attributed to retaining water.

Moonface

Exactly what it sounds like. A rounder face. This may impact one area more than the rest, such as your cheeks, or it can be the whole face.

Insomnia, acne, and more

The inability to sleep and skin problems like acne are other common complaints. So are sweating, greasy hair, increased hair growth, higher risk of infections, slower healing, thinning skin, and muscle wastage. This is by no means an exhaustive list!

My experience with pred side effects

I have been prescribed pred on a number of occasions. The first couple of years, it was the same side effects that bothered me. My face was rounder and I had increased hair growth, acne, and greasy hair. Yes, it was mainly how I looked! My face looked like a pizza!

I did experience mood swings, too, but I think they affected those around me more than they did me. I didn’t really notice! I was just told that it was happening. There was also insomnia, but it wasn’t too much of an issue because I felt kinda wired all of the time. So, even though I barely slept, I still had the energy to get up and go to work without an issue. The time I spent awake, I often used productively by getting things done in the house. I also spent awake time being less productive, and... eating!

The steroid hunger was real, so I’d often be having midnight, 2 a.m., and 5 a.m. snacks! Of course, all of those snacks don’t go unnoticed. I gained weight whenever I was on pred, but I’d lose it again soon after stopping them.

A monster living within me

As time passed, and I’d had more and more courses, I began to notice that my thought processes seemed to change. It sometimes felt like my thoughts weren’t my own. I was just watching them happen. I knew that I wouldn’t ordinarily have felt or thought that way, but I couldn’t figure out how I would normally think and feel.

So, I felt a little bit lost in my own body. Like a spectator of my own life. Like there was another inhabitant inside me that kept taking over, not giving me a chance to think my own thoughts. I didn’t feel like it troubled me too much, because I did at least recognise what was happening and why. I knew that when I finished them, the wee pred monster dwelling within me would bugger off!

The very last time I had pred was in 2013. I got caught in the flare loop of tapering down pred, the flare returning, increasing the dose, feeling better, reducing the dose, and then flaring again! It was a very worrying time. I was unwell and I wasn’t very happy. There was talk of another surgery, and I wasn’t ready for that. I became utterly miserable. So miserable in fact, that I started planning my suicide.

Thoughts of suicide

In the patient information leaflet, it says: "Contact your doctor if during treatment you get serious psychological side effects, e.g. depression and suicidal thoughts."

However, it didn’t cross my mind that the pred might have anything to do with how I was feeling... Why would it? I was mentally ill. I didn’t want to live anymore. I didn’t share my thoughts with anyone. I planned how I would take my own life, and that plan was the only thing that made me feel calm. At peace.

When I came off them, those thoughts faded away. It’s terrifying to think about what might have been if I’d not finished them when I did. It’s terrifying to think that your thoughts can be so distorted. I vowed never to have them again, and my IBD nurse agreed for a number of reasons – not being able to taper down without a flare returning, how many courses I’d already had, plus my mental instability.

The only evidence of me ever having had pred in the past that remains on my body is the thinner skin and stretch marks. But in my head, there will always be the memory of me calmly planning my suicide, laying in the bath.

Editor's note: If you or anyone close to you are in need of additional guidance on how to cope with depression or thoughts of self-harm, contact the National Suicide Prevention Lifeline at 1-800-273-TALK (1-800-273-8255). To find mental health providers or resources in your area, you can call the Substance Abuse and Mental Health Services Administration’s (SAMHSA) National Helpline at 1-800-662-HELP (1-800-662-4357).