Stephen’s Journey – Statin Induced Immune Mediated Necrotizing Myositis
In 2020 at the beginning of the Covid pandemic, I was in lockdown and doing lots of walking to maintain some fitness. I was also taking statins for high cholesterol.
My muscles and tendons started to hurt. I lost all strength in my legs, hips and eventually my arms and upper torso. When I stopped walking the tendon pain disappeared, but the muscle pain continued and lack of strength. I was feeling dreadful, struggling to breathe, incredibly weak and feeling as if I may die. A physio checked me out and said something much more serious was in play. Getting to see a doctor during the Covid period was of course not easy.
My GP did some research over a few weeks and ordered blood tests. Upon receipt of the CK result of 19,000, she referred me to a rheumatologist and I was urgently admitted to John Hunter hospital.
I was in hospital for about 10 days. I was treated with a long list of medications and a biopsy was taken from my left thigh. The biopsy was sent to pathology in Perth and Adelaide. I was diagnosed with statin induced immune mediated necrotising myopathy.
When I first came out of hospital, I couldn’t lift a towel to dry myself. Walking was a mystery and I had to teach myself how to take a step and turn around.
In the two years since, a huge combination of drugs has slowly led to improvement:
- Calcium & Vit D
The IVIG was a great help until after the 6th dose I had a reaction causing a spotty rash and small boils all over my body.
Little by little my strength has been regained but I continue to be fatigued and need to rest every day.
It’s now early 2022 and I’m finally off all the medications and my CK level is much reduced. Although a walking stick travels with me everywhere, I mostly don’t need it. Despite this improvement, I still feel difficulties every day in my calves and walking up slopes is a struggle. I monitor myself every day and constantly worry that the Myositis will return, and I’ll be back on the heavy regime of drugs.
My wife has been a tremendous support along my journey. Learning everything about my disease and the treatments has meant I’ve been supported every step along the way.