For me, tapering off prednisone is the story that never ends

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.

Do you like roller coasters?

I used to — until my life became an emotional roller coaster fueled by health challenges related to myasthenia gravis (MG) and other chronic conditions. The constant back and forth, up and down, side to side, and loop-the-loops have me seeing cross-eyed sometimes.

I’m back on the prednisone-tapering roller coaster now that the heat of summer has passed and it’s safe for me to do so. (High temperatures can exacerbate MG symptoms.) I’m thankful to have an amazing care team that trusts me to do what’s necessary for my health. As they’ve told me countless times, I know my body best. But I digress.

Last spring, at my most recent in-person neurology appointment, my doctor and I made a tapering plan. It was going well until summer hit and I got below 20 mg of prednisone per day. At this dosage, I began experiencing more air hunger, fatigue, and that “blah” feeling. After consulting with my neurologist, we decided it was best to hold steady at 20 mg/day and pause the taper, with a plan to start back up again in September or October.

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However, here in northern Wisconsin, our September felt like July. Autumn finally decided to grace us with its presence in early October. Without having to worry about days in the high 70s or low 80s F, I restarted the taper on Oct. 1 and got down to 15 mg/day.

Queue the air hunger.

This is one of the MG symptoms I loathe the most, and it seems to be controlled best by prednisone. That feeling of not quite being able to catch my breath is annoying for me and worrisome for my husband. He doesn’t like the fact that he can’t help me.

Air hunger can look like hyper or hypoventilation. In my experience, this leads providers to assume the cause is anxiety-related. Add to the pile of evidence (or lack thereof) that I don’t panic when I can’t breathe because of my experience as a long-distance swimmer who can my breath for two to three minutes. My time as an Army medic also helps me stay calm during emergencies.

Needless to say, air hunger has become one of my most frustrating symptoms. As a result, prednisone tapering has become one of the more frustrating issues I face in terms of disease management. I just want to be off the medication. It keeps me breathing, but it has also resulted in additional diagnoses such as osteopenia.

Tapering off prednisone at my own pace

It’s been two weeks and I still get that air hunger feeling on most days. I also experience pain in my back just below my shoulders, which I attribute to the accessory muscles between my ribs working overtime to help take the load off my diaphragm. Having difficulty breathing means more time on my BiPAP, less talking, and less physical activity.

My neurologist and I have decided to give my body two more weeks to adjust to this dose. If I’m still struggling, I will go back up to 20 mg/day for a while. After a month or two I’ll start the taper again, but at a slower pace. Rather than reducing my dosage by 5 mg, I’ll reduce it by 1 mg.

Just like the disease itself, every person with MG is different. Our symptoms and their manifestations are different. The treatments that work for us are different. And the ways our bodies react to changes in treatment are different.

I guess it’s time I buckle up, because I know tapering off prednisone will continue to be a bumpy ride. Meanwhile, I keep pushing to find a treatment plan that works for me so I can live my best life.

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.