Immune-Mediated Necrotizing Myopathy (IMNM), in a nutshell

 

1. Muscle Weakness. (July 2020: Video still of Laura trying to straighten her leg while also struggling to lift her head and arm). This was the only time in my life when losing weight was terrifying. It's probably obvious, but muscle-cell death leads to muscle loss.

2. Infusions (Intravenous immuoglobulin, aka IVIG, and rituximab     3. Lots of pills, primarily steroids & immune-suppressants.

While this myopathy (an autoimmune disease where the immune system kills muscle cells), affects different people in different ways, this is basically what it has looked like for me. Weakening of muscles, infusions of IVIG and rituximab, and the daily fortification of medication. 

In 2020 we discovered the myopathy when my muscles began getting weaker. Luckily we caught the return of the disease last spring early enough that I didn't lose nearly as much muscle as five years ago. As a part of my recovery in 2020, I had to build back muscle. Lots of PT and yoga and walking.

So far IMNM: the Revival has been much less scary and more textbook: Take these pills and show up for these infusions. Check progress with blood tests (usually quarterly) that look at the serum CK to make sure there's no excess muscle damage. Take measures to avoid infection (wear a mask, wash hands, socially distance, etc) because immune system is down.