Sometimes when you have an autoimmune disease you really don’t have a choice when it comes to taking steroids. If your disease is mild enough that you do have a choice – lucky you! That’s not the case for everyone.

Currently, I’m using high dose prednisone as a bridge until I can begin my new, more intensive infusion therapy. After my diagnosis, the earliest they were able to make an appointment at the infusion center was seven weeks out. I have been calling daily to ask about cancelations and earlier appointments – but so far, no luck! The wait feels like forever to me.

I would imagine that almost everyone who has to take prednisone both loves it and hates it in equal measures. It provides swift and dramatic relief for pain and inflammation, but it’s also a ticking time bomb of consequences.

Side effects

Some of the side effects happen almost immediately. For me, it’s manic daytime energy followed by severe nighttime insomnia. One day last week, I lifted weights, took my friend’s dog for a run, went on a tough hike in the mountains, cooked dinner, scrubbed the bathrooms, vacuumed, did three loads of laundry, then sat up all night listening to audiobooks and guided meditations, hoping that somehow sleep would eventually take me.

I’m sure having that boundless energy sounds great to some, but it’s actually quite uncomfortable and unnatural.

Personally, I don’t struggle with increased appetite or weight gain. I have some minor water retention, but I haven’t (yet) developed a moon face or had my body fat shift around.

I worry more about the long term effects. Are my bones disintegrating? Will my teeth fall out? Am I bound for high blood pressure or diabetes? Will I wreck my adrenal glands or land in the hospital with a serious infection? These are all real possibilities.

Dealing with unsolicited comments and advice

Also frustrating are the well-meaning people who chime in, ‘You know long-term prednisone is really dangerous, don’t you? You probably shouldn’t take so much.’ Yes, I am 100% aware that prednisone is not ideal. My doctors know, too. I’m in an untenable situation and have to make lots of tough decisions about my health. Please be nice and leave your personal medical advice unspoken.

My tips and tricks for dealing with prednisone

These are a few things that help me feel better while I’m taking higher prednisone doses.

• Stay well-hydrated
• Eat healthy whole foods
• Exercise – cardio for your heart, weights to keep your bones stronger
• Supplement with calcium and vitamin D
• Stay away from sick people
• Tend to any little cuts or scrapes before they get infected
• Stick to your sleep schedule, even if you’re struggling to sleep
• Relax with yoga and deep breathing exercises