My Horrible Side Effect with Prednisone

I was put on prednisone because the Mestinon alone didn’t help, nor did the intravenous immune globulin (IVIG). The first time I was on prednisone, I was on a 20 mg dose twice per day.

Receiving so much IV solution for the IVIG and not long after starting on prednisone, I began to swell all over. It got so bad, I asked for help related to the edema (swelling caused by fluid retention).

I started taking furosemide (Lasix) 20 mg daily. It helped, but not enough. So it was increased to 20 mg twice a day. It was really working ... but it wasn’t keeping up with the edema. I know prednisone works well for many people, but for me, the side effects were a nightmare!

My symptoms returned

A little over a year went by and thinking I was in remission, I was weaned off the prednisone and Mestinon. Once I was off the medication, things were great for about 2 months. No myasthenia gravis symptoms, no problems.

Then one day, my husband noticed my right eyelid getting lower and my eyes were no longer aligned. Within a couple of days after that, every symptom I had returned.

I notified my neurologist and was put back on the Mestinon and prednisone. After 2 weeks, I still was having symptoms as if I wasn’t taking anything and was even getting worse. It came back with a vengeance!

She increased my prednisone dosage to 40 mg, then 60 mg twice a day. After about another month or 2, my symptoms had again been resolved.

Experiencing weight gain

It was great - no more myasthenia symptoms, but the edema was worse than ever. I was so swollen my neck became an extension of my face. I’d turn my head to one side and the edema in my face would force my eye closed on the side I was turning to.

I must have gained at least 200 pounds, even with the dosage increase to 80 mg of furosemide twice daily. The edema had gotten so bad, it was embarrassing to be seen in public. I didn’t want to even look in a mirror. I’ve had a weight problem all my life but this was way beyond that.

People would stare

I remember one day, we went after groceries. I’d been cooped up at home for so long, I needed to get out and do something. By this time, I was in my powerchair. My husband dropped me off near the door and went to park the car.

I went inside and waited for him not far from the doors. People came in and most would glance at me, then turn their eyes away. But this one man stared at me from the time he first saw me until he was well past me.

I just wanted to hide and cry. I felt so ashamed for something I had no control over. Thankfully another man saw what happened and kindly reassured me all was ok. We did our shopping and went home.

Needless to say, it was some time before I could go out again, but I finally was able to get some enjoyment out of life again!