My Seronegative MG Journey With Prednisone

When I was first diagnosed with Myasthenia Gravis (MG), I was in the middle of a severe flare-up. It was so bad that my neurologist wanted to admit me as an inpatient to start emergency IVIG treatments.

However, because I am seronegative, the university hospital refused to recognize my diagnosis. They simply didn't believe in seronegative MG, so they denied me treatment altogether. To make matters worse, my neurologist didn't have practicing privileges at that hospital to override them.

Instead, the hospital staff tried to tell me the flare was all in my head, suggesting I had Functional Neurological Disorder (FND) rather than seronegative MG. Yet, when my neurologist had sent me by ambulance in the middle of the night, my single breath count was a terrifying four.

The prednisone journey begins

After being released by the university hospital and sent home with no treatment, we had barely left the parking lot when my neurologist called my personal phone. He told us to stop at a pharmacy on our way home to pick up CellCept and Prednisone.

He started me on 20 milligrams of Prednisone daily, which quickly escalated to 30 milligrams. While I know many people take much higher doses, 30 milligrams was my absolute limit. Because of my other pre-existing medical conditions, a higher dose would have caused severe, dangerous complications.

A drastic spike in blood sugar

The first major complication was a dramatic spike in my blood sugar. I was already diagnosed with Type 2 diabetes, but after starting Prednisone, oral medications were no longer enough. I suddenly required insulin injections three times a day, and they weren't small doses, either.

At that point, it felt like I couldn't even breathe without my blood sugar skyrocketing into the 400s and 500s. It didn't matter what I ate; absolutely everything sent my numbers into the stratosphere.

Compounding the pressure

Prednisone is also notorious for causing high blood pressure, an issue I had already been fighting for years and that runs heavily in my family.

In fact, uncontrollable blood pressure is actually one of my primary warning signs that an MG flare is starting, and it doesn't stabilize until the flare subsides. Compounding that baseline issue with 30 milligrams of Prednisone meant I had to constantly monitor my blood pressure to ensure it wasn't reaching dangerous levels. Checking it so frequently got old very fast.

The final complications

Then came the physical transformations. I developed severe swelling in my face, my legs, and across my entire body; I practically looked pregnant.

And don't even get me started on the facial hair. I began growing sideburns and a beard that almost put my husband's facial hair to shame.

Six years later

Today, I am down to just 2 milligrams of Prednisone every other day. Hopefully, by the beginning of the year—or shortly after—I will be off it entirely.

The original long-term plan was to keep me on a maintenance dose of at least 5 milligrams for the rest of my life. However, I have since developed new, extenuating health issues that make staying on steroid therapy long-term incredibly unsafe.