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

 

1. Muscle Weakness. (July 2020: Poor quality video shot of Laura trying to straighten her leg while also struggling to lift her head and arm). The only time in my life when losing weight was unwanted and scary—all that muscle slaughter.

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. 1-2-3. 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 The Return of IMNM has been much less scary than the original — and more textbook: 

• Take these pills. 
• Show up for these infusions. 
• Check progress with (usually quarterly) blood tests 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) since the immune system is down.