Saying Goodbye to Prednisone

I'm eating breakfast on a Saturday morning and all seems normal. However, this morning is different. For the first time in 2 years, a little white pill isn't in front of me.

After my myasthenic crisis in 2019, I was given 60 milligrams of prednisone to control the symptoms. These little white pills became a daily reminder that I was sick.

Prednisone is not usually recommended as a long-term medication due to the potential risks and side effects. These side effects can include weight gain, osteoporosis, and mental health changes.

Cutting out prednisone can be trickier than other medications due to the way our bodies learn to rely on them.

Starting to taper down

When I was prescribed prednisone, I had already read all sorts of horror stories on myasthenia gravis (MG) forums.

Most people seemed to have a love-hate relationship with this medication. I knew that I wanted to try tapering down as soon as possible and worked with my neurologist to find the best plan.

We had to ensure my body was supported in other ways to effectively taper down without causing flares. Due to the holistic approach I was taking, I went to acupuncture twice a week. These treatments supported my body enough for me to start tapering down.

I started tapering down 1 milligram every 2 weeks. I would feel the drop a few days after tapering down. My symptoms would increase in severity like a wave and gradually get better again after a week in. I continued like this until I got down to 5 milligrams.

Needing another intervention

When I got down to 5 milligrams, I was thankful that my "moon face" had gone down. I hadn't felt like myself for so long. Whenever I looked in the mirror, I saw someone else. A round face, drooping features, and a half-hearted smile.

Though my outward appearance was normalizing, my symptoms started becoming unmanageable. The wave of symptoms became stronger than I could handle. I had double vision, was short of breath, and couldn't eat a full meal due to swallowing issues. I reached out to my neurologist to see what other options I had.

We decided on another treatment option and it ended up being extremely effective. By May of 2021, I was symptom-free and my neurologist cleared me to start tapering down again.

The final farewell

Since I was on such a low dose at 5 milligrams, we decided to take it a lot slower. I started tapering down by half a milligram every 2 weeks.

It took about 5 months of continually tapering down to get to 0. This time with my support coming from the other treatment I had, I was much more stable.

Each wave was smaller. Most of the time I didn't even notice. As I step into the coming week without this little pill, I feel a little freer. I feel accomplished.

Throughout the last 2 years, I had been working towards this moment. My body fought through every wave as I went from 60 milligrams to 0.

Wherever you are on this journey, I want to remind you of how powerful and strong your body truly is. We may be weak, but we are becoming resilient internally and externally day by day.