My five-day hospital stay was a whirlwind of tests, scans, treatments, physical therapy (PT), and occupational therapy (OT), but little rest. Progress was made. My disease had a name, I started treatment, had referrals for a neurologist, a visiting nurse, and in-home PT sessions.
I was encouraged to have a diagnosis, but I did not know what I was up against. Hospital staff referred to the disease in multiple ways: statin-induced necrotizing myositis, myositis myopathy, anti-HMGCR myositis, and myositis. I didn’t know what some of these terms meant and took to Google as soon as I got home. Based on my research, I refer to the disease as statin-induced necrotizing myositis because it provided the best description: an autoimmune disease triggered by the use of statins causing the death of cells in my muscles.
In-home physical therapy and visiting nurse sessions started right away, but seeing the neurologist was a different story. Her office did not call to schedule an appointment as promised, and when we called, the office administrator offered appointments in six months. Back to the slow lane…thankfully my primary care physician (PCP) contacted the neurologist and got me back in the express lane. I had an appointment the following week.
Between my neurologist and my research I better understood the disease and its treatment. The presence of the anti-HMGCR antibody in my blood confirmed the diagnosis. HMGCR refers to 3-hydroxy-3-methylglutaryl-CoA reductase, which is the enzyme created by a statin to lower cholesterol in your blood. The disease is rare and relatively new. The antibody was identified in 2010, and only two people in a million per year have been identified with it.1
How did I get this? The odds are long, I had taken a statin for one year, and another year passed before symptoms appeared. It doesn’t seem fair or logical, but I quickly realized the how and why were not important. My time was better spent focused on treatment and recovery.
My neurologist laid out a plan for monthly infusions of intravenous immunoglobulin (IVIG), which is a mix of immune system antibodies, daily doses of steroids, and some other drugs intended to prevent potential side effects. She explained the IVIG infusions would take a few months to take affect, but once they did, I would be able to rebuild my strength. There were no guarantees I would return to “normal” but things should improve. The plan left me hopeful and content about my recovery.
- Thomas Khoo, Hector Chinoy,
Anti-HMGCR immune-mediated necrotising myopathy: Addressing the remaining issues, Autoimmunity Reviews,
Volume 22, Issue 12,
2023,
103468,
ISSN 1568-9972,
https://doi.org/10.1016/j.autrev.2023.103468.
(https://www.sciencedirect.com/science/article/pii/S1568997223002021)
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