The Relationships Among Obesity, Prednisone, and Myasthenia Gravis

How columnist Shawna Barnes curbs steroid-induced weight gain

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by Shawna Barnes |

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I’m fat. My body mass index (BMI) is currently 37.9 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.)

According to a 2020 study published in the journal Frontiers in Neurology, more than 50% of women and almost 80% of men with myasthenia gravis (MG) are considered overweight or obese, with BMIs of 25 or greater.

And tomorrow just so happens to be the first day of National Obesity Awareness Week.

High-dose prednisone and weight gain

Over the past several months, I’ve been working with my care team to safely wean down the high dose of prednisone I’ve been taking for the past two years. In previous columns, I’ve described my journey with prednisone and how it was partly to blame for me gaining 80 pounds in a year.

After my first myasthenic crisis in August 2020, I was taking 60 mg of prednisone every day. We eventually got it down to 40 mg a day.

The photo shows a middle-aged Caucasian female with glasses, wearing a red shirt and teal cap, with a medical IV tube poking out of the neck of her shirt. She is receiving IVIG therapy.

Columnist Shawna Barnes receives IVIG last month. (Photo by Shawna Barnes)

Since moving to Wisconsin last year and beginning to receive regular intravenous immunoglobulin (IVIG) treatments, my doctors have been able to get me down to 20 mg of prednisone a day. And let me tell you: What. A. Change.

At this dose, I no longer have insatiable cravings for sweets. I no longer have insatiable cravings, period. One change I made during the higher-dose days was substituting fruit for candy when I experienced those cravings. It helped me not pack on additional weight, but it didn’t solve the problem.

What’s the problem, you ask?

In my opinion, it’s the lack of education on how long-term prednisone use affects our bodies and how we as patients can combat it using a multidisciplinary approach.

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How I curb prednisone-induced weight gain

The first step is to acknowledge and understand that, yes, taking high doses of prednisone for long durations can lead to weight gain. Understanding the how and why is key: Prednisone mimics the stress hormone cortisol, so when you take high doses of it for a long period of time, the pituitary gland will stop stimulating the adrenal glands to produce cortisol. This can lead to increased appetite, water retention, and fat redistribution.

This knowledge allows us to take the offense in our day-to-day life and management of MG. One of the first adjustments my husband and I made after learning this information was to keep nutritious, whole foods in the house, with a minimum of candy and junk food. I used protein bars instead of candy bars.

The next thing I did was ensure I had high-protein foods at home, since protein makes you feel full longer. Enter again the protein bar. My husband, who’s a personal trainer and nutrition coach, told me that the best bars tend to offer 1 gram of protein per 10 calories. So if your bar has 200 calories, it should have 16–20 grams of protein. His expertise has certainly come in handy while I’m learning to navigate this craziness!

If, like me, you experience occasional dysphagia (trouble swallowing) when bulbar symptoms flare, finding foods that are both nutritious and easy to eat can be challenging. Most of my easy comfort foods were calorie-dense, but they left me feeling hungry again an hour or two later because of my increased appetite.

I started using French vanilla protein shakes (with 30 g of protein per 150 calories) as creamer for my coffee. Usually I drink my coffee black and only drink “froofy” coffee as a treat. Using the protein shake to make froofy coffee has helped me satisfy that sweet craving. It feels like an indulgence, but it isn’t.

Having finger or snack foods available has also been helpful. During this process, I’ve discovered that I’m a grazer, a snacker. I like to eat a little bit of this and a little bit of that every few hours. My husband and I started making sure I had snack foods in the house, which enabled me to try a Pinterest idea: the snackle box!

Yes, you read that right. Snackle box. I got a couple of tackle boxes and craft organizers and set the dividers up so that I could create my own Lunchables. I added cheese cubes, pickles, olives, crackers, lunch meat, shrimp, cut-up apples and peanut butter, and so on. You get the idea.

My prednisone journey is not unique. Many of us experience rapid weight gain. It’s important that we take our health into our own hands and manage what we can. It helps to understand the hows and whys. I hope some of these strategies help make your day-to-day a bit easier.

Happy 2023!

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.


Nini avatar


Thank you, thank you for this post. My struggles with this weight gain has been horrible. I was diagnosed with Seronegative MG and I can’t take the IVIG any longer it doesn’t work for me. I take 40mg prednisone, 1250 of cellcept, 60mg of mestinon three times a day and I just had a plasma exchange. I also was diagnosed in 2017. Je
With all of this my biggest issue is the weight gain.. I will try some of your suggestions. Thank you again!

Shawna Barnes avatar

Shawna Barnes

I'm so glad you found this article helpful Nini! Please don't let the weight gain get you down. At my heaviest I was 253 pounds. I gained more than 80 pounds before my husband and I were able to figure some things out. Please feel free to reach out if you continue to struggle. Best of luck! I look forward to hearing if you had any luck with some of the suggestions in this article!


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