I have myositis but hope I eventually get to the point of not needing any medication

immune-mediated necrotizing myopathy, Myositis, creatine kinase, methotrexate

I started to feel unwell in the autumn of 2019, with nausea, dizzy spells and weight loss, shortly before going on holiday for two months to Australia. My symptoms worsened while in Australia. I experienced aches and pains in my legs and my core muscles became weak.

It was a shock to lose so much strength in my body as I had kept myself fit and well until this point with tennis, gardening, walking and pilates.

On return home in early January 2020, I immediately sought medical attention. My GP took blood tests, realised something was seriously wrong and referred me to a specialist, who in turn referred me to Prof Chinoy at Salford Royal Hospital. By this stage any physical activity was extremely difficult. I had lost more weight, felt extremely weak, unable to drive and had difficulty getting in and out of bed.

Prof Chinoy performed various tests including a muscle biopsy and electromyography (EMG) examination of my upper and lower limbs and paraspinal muscles. The EMG revealed that I was suffering from myositis.

The results of a further blood test showed that I had statin-induced necrotising myopathy.  It was a shock to be told that the statin I was taking had caused my body to make an antibody that had attacked my muscles… and this was continuing even though I had stopped taking the statin.

Blood tests revealed that I had abnormally high levels of creatine kinase, a product of muscle breakdown.

Prof Chinoy prescribed prednisolone steroid therapy, alongside (a few weeks later) methotrexate with the steroid being gradually reduced. I was referred to a physiotherapist for exercises to help rebuild my strength. After around five weeks I noticed definite improvement in my strength, reflected by reductions in my creatine kinase levels.

By June 2020 I felt distinctly better but still not capable of any arduous activity. However, I was able to start taking short walks with my husband and as the summer progressed my condition improved. Regular blood tests showed my creatine kinase levels were falling; I could take longer walks and do more gardening.  

By November 2020 my creatine kinase levels had come down to normal and I felt very optimistic although I still suffered from sore muscles, especially in my legs. I continued to reduce the steroid dosage and finally came off the steroid in late January 2021, continuing with methotrexate only.

Work in progress

It is now March 2021 and my creatine kinase results have started to increase again, so I have gone back on a low dose of steroid pending further review with Prof Chinoy. It seems there may be a fine balance of the different medications needed to keep the myositis under control.

My experience of living with myositis has coincided with the coronavirus pandemic. Throughout the pandemic I was shielding so the myositis didn’t have as great an effect on my life as it would have done otherwise. I am looking forward to being able to resume everyday activities. Although I still feel weaker than normal, I am much better than when I started treatment. I feel positive and hope I will eventually get to the stage when I don’t need any medication at all.

Keen to submit your own story? Email iona@griffinpublishingsolutions.com.

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