3 lessons I learned after long-term prednisone use for MG

Note: This column describes the author’s own experiences with prednisone. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

It’s been a year since I started writing about the weight gain I experienced while taking high-dose prednisone to manage myasthenia gravis.

I’ve spent this time fact-finding and trying to understand my body and what various treatments do to it. Truthfully, I no longer blame my weight gain entirely on prednisone, which I consider a miracle drug that has helped me breathe and avoid a myasthenic crisis.

I’ve noticed that prednisone is one of those drugs we all love to hate. It works its magic in the short term but can have significant long-term side effects. Studies have shown that prednisone can cause water retention. And it is common knowledge that it can cause the infamous moon face.

At my heaviest, I weighed 255 pounds. I was miserable. I had a harder time breathing and moving. I was ashamed of the person I saw in the mirror. But when I look in the mirror today, I’m proud of the woman staring back at me.

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What I’ve learned

I wish our physicians and care teams were able to better explain to us why prednisone causes weight gain. In my experience, the mechanics behind weight gain weren’t discussed, which only added to the frustration. If I had known then what I know now, I believe I could have had more control over the weight gain and the frustration.

Through trial and error and my own research, I found that one of the reasons prednisone was associated with my weight gain was due to the insatiable cravings it triggered. We all have different thresholds for when those cravings begin. Mine was a dosage of 20 mg — anything more than that and I’ll crave all the junk food.

When I was able to identify that I wasn’t really craving that candy bar, per se, just something sweet, I began to substitute unhealthy snacks with something that was better for me. This might alternate between a protein bar and a bowl of fruit. Also, watermelon has been my go-to food over the last year to satiate that craving for sweets.

As I steadily tapered to lower and lower prednisone doses those cravings subsided. I could focus more on other aspects of my nutrition. I came to realize that processed bread and pasta made me bloat, so I cut those out of my diet, along with cereal. More pounds came off.

As of this writing, I weigh 225 pounds — which is down 30 pounds from my heaviest weight.

Seven months ago, my body mass index (BMI) was 37.9 kg/m². Today, I’m at 35.3 kg/m². (The National Heart, Lung, and Blood Institute notes that a BMI of 18.5–24.9 indicates a normal weight, while a BMI of 30 or greater indicates obesity). While still considered obese, I’m making slow and sustainable progress that I’m happy with.

My biggest takeaways

If I could go back in time and speak to myself when my prednisone journey began, three things I would say are:

1. Remember that prednisone isn’t the only culprit behind the weight gain. You have control over the foods you choose to put in your mouth when cravings hit. You can set yourself up for success by keeping healthier substitutes in the house. It’s time to take ownership of your well-being.

2. Utilize the services of a personal trainer and/or nutritionist who is familiar with myasthenia gravis. Strength training can improve bone density, which helps lower the risk of osteopenia from prolonged steroid use. A nutritionist can offer recommendations for foods that are high in protein and fiber, as these help you feel full longer.

3. Take photos of yourself — even if an extra 75 pounds show. These photos will show the small progress you’ve made as your face thins, and they’ll catch a sparkle in your eyes because the treatment plan your care team has you on is allowing you to live your best life possible.

Above all else, I’ve learned that I have more control than I once gave myself credit for.

Note: Myasthenia Gravis 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 Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.