My Love-Hate Relationship with Prednisone

[Joachim]

Twice in the past month, a charley horse in my right calf has ripped me from blissful sleep. Even though prednisone wasn’t to blame for the agonizing 4 a.m. wake-up calls, it’s the first thing I thought about while lying in bed, writhing in pain.

I’ve lost count of the number of times I’ve been put on prednisone to treat my sarcoidosis, but I’ll never forget its many horrible side effects, which is why I hate going on it and love being taken off it. Whenever possible, I seek alternatives because even short-term use of oral corticosteroids carries risks.

However, I do have ways to push through the worst of its side effects. 

It’s not you; it’s the prednisone.

I find an emotional anchor. When doctors prescribed me a high dose of prednisone after my sarcoidosis diagnosis, a friend who had been through steroid treatments gave me a warning. He told me I would do some crazy things, and I wouldn’t realize just how crazy I act except in hindsight once off the prednisone. He was right. Prednisone takes me on a roller coaster of emotional extremes. That’s why I always make sure I have someone I can count on whenever I need them to talk me off of the ledges of my crazy. 

Drink, eat, repeat.

Prednisone sends my appetite into overdrive. It also depletes potassium, which causes unforgettable, nightmare cramping in my hands, legs, and feet, and causes fluid retention. I’ve largely escaped prednisone-associated weight gain and the dreaded “moon face” by drinking more water, consuming less sodium, and eating protein-rich foods (which make me feel full longer). I also eat plenty of vegetables and fruits — especially those rich in potassium, like bananas and sweet potatoes — to help combat muscle cramps. 

What is sleep?

You’d think that battling muscle cramps, mood swings, and a relentless appetite would exhaust a person by the end of the day. Nope. Insomnia, which becomes more likely with dosage increases, was another surprise side effect of prednisone. I was able to reclaim sleep by taking my fully prescribed dose before 9 a.m., which is the optimal time, and taking Benadryl before bed, as recommended by my physician. 

I wage war on germs.

Prednisone suppresses the immune system, so I wash my hands frequently, which is the best defense against germs. I also steer clear of anyone who is sick and avoid crowded public places — especially confined areas such as trains, buses, and planes — when possible. 

Side effects make life on prednisone miserable, but I’ll keep pushing through courses as needed, as long as the benefits outweigh the risks and harm.

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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sarcoidosis.

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