What To Expect When Taking Corticosteroids

I stare up at the IV bag of clear liquid snaking into my arm: "1000mg methylprednisolone," the nurse at my rheumatologist explains. This is the last of 3 emergency infusions of steroids. When fatigue made getting out of bed impossible 2 weeks ago, I’d started myself on a dose of oral steroids I kept just in case. When my symptoms escalated instead of improved, my doctor noticed the beginning of a severe brain flare of lupus cerebritis. I have a history of cerebritis, and IV steroids have worked in the past to curb a severe brain flare 6 years ago.

Prednisone is the most commonly used steroid. Because I’m unable to tolerate it, my doctor prescribes methylprednisolone, or "Medrol" instead. I have learned to appreciate steroids for the life-saving medication they are. When I first start on a dose of steroids, my fatigue and pain seem to magically disappear. But then the side effects of the steroids catch up with me.

Steroid side effects

After years of using Medrol to squash flares, I have learned that steroids rarely come with just one side effect. Like scratching a lottery ticket, a person with lupus might "win" more symptoms than other people. Unlike a lottery ticket, you’ll definitely want to return everything you "win" right away. Here are some of the symptoms you can expect to experience while taking steroids:

Emotional irritability

It’s not uncommon to feel angry, sad, or even depressed while taking steroids. You might be irritable or lose your patience more easily. You also might cry or feel unhappy for no reason. When I'm on steroids, I try to counteract these feelings by reading jokes online or watching funny movies.

Strange cravings and extreme hunger

You might find yourself consuming more food than usual, craving unusual culinary combinations, or eating food you don’t normally eat. A friend from my lupus support group told me she ate peanut butter by the spoonful while on steroids, even though she usually hates peanut butter. When on steroids, I tend to crave protein, particularly red meat and cheese, and also sweets. I’ve even craved food that doesn’t exist, like cheese-flavored ice cream!

Weight gain and unusually placed fat pockets

Cushing’s Syndrome occurs when you take steroids for an extended period of time. Cushing’s Syndrome alters your appearance, depositing fat in unusual areas of the body like the face, stomach, and back of your neck. Your face might become very round while on steroids, even if the rest of your body is slim. Fortunately, the deposits of fat will decrease as you taper off steroids and your face will return to its normal shape.

High blood sugar

If you take oral steroids for a long period of time, your doctor will likely need to monitor your blood sugar as well as your A1C. In severe cases, steroid use can result in diabetes, which may or may not be reversible. Your rheumatologist and general practitioner can help you manage this if you develop this symptom.

Heartburn

Acidic foods like grapefruit and tomato-based sauce can exacerbate this side effect. I take over-the-counter Prilosec to manage this symptom. If you experience heartburn while on steroids, be sure to speak to your doctor. Heartburn isn’t just uncomfortable; it can damage your esophagus, so it’s important to take care of it.

Muscle weakness

Unlike steroids that bodybuilders might take, corticosteroids cause muscle atrophy, particularly in your quadriceps. If you are reading this during your first experience taking steroids and are hoping to jumpstart your Olympic career, I’m sorry to disappoint you. Fortunately, muscle strength can be regained through exercise after you taper off steroids.

Steroids should never be stopped suddenly

It’s important to never just stop taking steroids, even if the symptoms are horrible. Steroids replace a naturally occurring hormone in your body called cortisol. When your body recognizes the presence of steroids, it stops producing its own cortisol, which your body needs to function. Steroids always need to be tapered down rather than stopped completely to avoid withdrawal or an increase in the severity of your lupus flare. So stick to your steroid regimen by watching some good Eddie Murphy or Amy Schumer movies, checking in with your friends, and devouring a delicious hamburger meat/peanut butter/chocolate sauce/pickle smoothie!