Surviving Prednisone: A Patient’s Perspective Of Long-Time Usage

Prednisone is amazing. As long as you only have to take it short-term. Long term it’s a nightmare. The side effects are horrible and frustrating, and they can cause significant damage, which is something doctors don’t always warn you about. Over time you can develop cataracts, glaucoma, hypertension, osteoporosis, or other things. 

I took prednisone and budesonide (a different steroid for Crohn’s disease) in total for 2-3 years because other medications just were not helping my Crohn’s disease. The consequence of that was that one morning I suddenly woke up in excruciating pain. Any little movement caused painful shocks up my spine and down my legs. It was the worst pain I had ever felt, by far, and I’ve been hospitalized for C. diff, had a partial blockage, and broken bones. All of those were painful, yes, but they came nowhere near this. 

I was screaming from how bad it hurt. My family took me to the emergency room, and after some scans and x-rays, they determined that I had degradation in multiple disks in my back, caused by long-term steroid use. A later DEXA scan showed that I also developed osteopenia in my hip. They couldn’t do anything to help. I had to let it get better on its own over time with rest and physical therapy. 

Because of steroids, I had such intense hip and back pain that I could barely walk for over a year. I also lost an inch in height! I won’t say that there wasn’t a benefit to taking prednisone. At the time my Crohn’s disease was extremely bad and it was the only way to keep it under control. It just would’ve been nice to know the risks that taking steroids long-term has. If you have to take steroids for a long time, talk with your doctor about the likeliness of problems it coudl cause down the line and ways to minimize them. 

Since I took it for so long and on different doses, I have experienced all sorts of symptoms. Obviously, everyone has different experiences, but these are my experiences with prednisone side effects and how I dealt with them:

Mood swings

Prednisone made me so emotional. When I was on high doses I’d get daily panic attacks, irritated at the smallest things, suddenly anxious for seemingly no reason, and cry about anything. On the other side, I’d also have bursts of energy and felt like I could take on the world. Because chronic illness is a lot to deal with, and prednisone mood swings definitely don’t help, I started seeing a therapist. I also saw a psychiatrist who prescribed me antidepressants. 

Seeing mental health professionals helped me deal with my emotions, but it didn’t stop them. So to avoid conflicts or misunderstandings, I let my friends and family know what was going on with me. Even though they didn’t fully understand what I was going through, they were still super patient with me. And having someone to vent to made a huge difference. 

Fast heartbeat 

Sometimes my heart felt like it was about to beat out of my chest. So I got a Fitbit to monitor my heart rate and make myself sit down and breathe whenever it was getting too high. There wasn’t much I could do about it, but knowing what was happening helped me have a little more control over it. 

Insomnia

Another pesky side effect of prednisone is insomnia. It’s like your brain is on a never-ending caffeine high, and sleep is just a distant dream. At one point I was falling asleep at 6 am and waking up at 8 am. Since prednisone also causes restlessness, I didn’t feel completely exhausted all the time which was at least a nice balance. 

However, nobody can function on just a few hours of sleep every night for long. Eventually, I talked to my doctor about it and they prescribed a medication to help me sleep. When I was on lower doses, taking over-the-counter melatonin was enough. 

Night sweats

Falling asleep was hard enough, but when I did manage to sleep I also had to deal with night sweats. The higher the dose, the worse it got. On low doses, I’d wake up and just change my shirt and go back to sleep. High doses were harder to deal with. At one point it was like someone had dumped a bucket of water on me. I had to not only change my pajamas but also my sheets and blankets. 

Keeping extra pajamas and sheets, along with a towel, near my bed helped me dry off and change sooner so I could go back to sleep faster. An indirect fan also helped to keep me cool, but a direct fan made waking up wet feel colder and worse. Light fabrics for pajamas, sheets, and blankets were also helpful. And after sweating so much, it was important to rehydrate throughout the day. 

Appetite 

Prednisone gives you hunger, but not a normal kind of hunger. Your belly can be totally stuffed, but the prednisone brain keeps saying ‘I’m hungry’. I had to give it to my dog once and on the first day, he ate 8 meals and was still demanding more!  

For the most part, I gave in to the cravings, but of course in moderation. I also did things to give my brain the illusion of eating, like chewing gum, sucking on lollipops, and constantly drinking water. Luckily, I didn’t always have issues with intense hunger because I was on medications that can lower my appetite, which left me with a normal appetite. 

Fluid retention 

A crazy appetite can mean crazy weight gain, but it may not all be from extra food. Some of it is from fluid retention, another unfun side effect of prednisone. The swelling can cause moon face, which basically is your face looking extra wide and round as a side effect of long-term prednisone use. It can mess with your self-esteem, and unfortunately, there’s not much that can be done about it, but the good thing is that it slowly goes away once you taper off the medication. 

Slow healing

This is something that can range from being annoying to being a serious problem. For wounds that risk infection and are taking too long to heal, it can be beneficial to see a wound care specialist. It’s also good to make sure you’re eating a nutritious diet that’s high in protein and vitamins. 

At one point my Crohn’s disease got so bad I had to get an ileostomy loop. Because I had been on prednisone for a long time at that point, I had complications with the healing process. A stitch came loose and I had a gaping wound that was over an inch wide. I saw a wound care doctor who helped me through the process, but part of it was also my diet. I drank protein shakes, fresh squeezed orange juice, and blended grape juice to help with the healing. Now it’s unnoticeable that there was ever a wound.

Withdrawal 

This is probably the worst possible side effect and one that’s rarely talked about. There’s a reason you shouldn’t suddenly stop taking prednisone if you’ve been on it for a while. After some time your body becomes dependent on it. It replaces your natural cortisol and takes time for your body to readjust when stopping it. 

When I was on high doses, if I was late to take my daily dose I would start getting withdrawal symptoms. There were times when I’d be sitting in class, shaking and sweating uncomfortably because I forgot to take prednisone beforehand. Thankfully the symptoms would go away once I took my daily pill. To avoid this I’d set an alarm to remind myself to take my medication. I also split up the dose, taking half in the morning and half at night, to avoid withdrawal symptoms. It had the extra benefit of lessening most of the symptoms altogether since it was a lower dose at once. 

Prednisone can help a lot of conditions get better, but it has a ton of side effects and has the potential to cause a lot of issues down the line. It’s a necessary evil sometimes, but it’s worth discussing all possible options with your doctor, along with doing your own research. The side effects suck, but it is possible to deal with them, and they won’t last forever.