The impact of ‘flare fear’ on my MG symptom management

Weaning off prednisone raises concerns for columnist Shawna Barnes

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by Shawna Barnes |

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I’ve lost 20 pounds in three months. Crazy, right?

In previous columns, I discussed some of the “aha” moments I’d experienced while taking high doses of prednisone to manage my myasthenia gravis (MG) symptoms. I gained weight — a lot of it — and blamed the medication.

One thing my husband and I discovered was that it wasn’t necessarily the medication making me gain weight, but the food choices I made to satiate the cravings caused by prednisone. Water weight and edema (swelling) were also contributing factors.

In November 2022, my neurologist and I decided it was time to start weaning down my dosage of prednisone. Once I got to 20 mg a day, the crazy cravings for sweets stopped. It was like night and day. As a result, my appetite went back to what it was before taking prednisone, and I started shedding the pounds.

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So for me, more than 20 mg of prednisone a day seems to result in weight gain. My doctor’s plan for weaning me off it was to slightly reduce the dosage every month.

In January, I was supposed to start alternating between 20 and 15 mg a day. But in December, I got sick with something that really knocked me on my tush. It was some virus that evolved into bronchitis, which lingered for three months. Needless to say, my care team and I decided it wasn’t safe to wean me off the prednisone while I was so sick.

Flare fear

It’s now almost the middle of April. I feel good and probably should’ve taken the next step in my prednisone weaning. It’s important to my care team that I reduce my dosage as quickly — and safely — as possible because I’ve developed osteopenia, or a loss of bone mass, in my back and hips. They also believe the medication could be exacerbating the symptoms of a few other chronic health conditions I have.

But you know what? I don’t want to.

I don’t want to experience more air hunger than I already do on occasion. I don’t want my joints to hurt. I don’t want to deal with the week or two of symptom exacerbations that come with the weaning process.

I know that I should wean, because the long-term health benefits far outweigh the short-term discomfort. But I feel good. And the weather is finally starting to improve here in northwestern Wisconsin, which means I’ll be able to start safely walking our driveway again. And I don’t want to feel like I’m taking a step back when the reality is it’d be a step forward.

Flare fear is real, and it’s the part of having chronic health issues I think I might dislike the most. It holds me back from pushing the boundaries to see just how well my current MG treatment plan is working. I guess I should follow my own advice, get out of my own way, and just do the damn thing.

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.


Jennifer Parr avatar

Jennifer Parr

Thank you for writing this "Fear of Flare" it is so very real for me as well. The weight gain has been horrendous over the past year and I would love to come completely off of Prednisone but for every reason you stated I am terrified.

Shawna Barnes avatar

Shawna Barnes

Hi Jennifer. Thank you for your comment! I gained more than 50 pounds while on high doses of prednisone. My taper has been slow and I'm finally down to 20mg/day. One thing that I found that really helps when I get the cravings for the junk food is to substitute. Instead of candy bars, we keep protein bars in the cupboard for example. :) It really helps. - Shawna


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