need advice on mmm

My 6 year old OES has been diagnosed with masticatory muscle myositis. There's pretty much no muscle left on top of her head. She can open her mouth all the way and has no problems eating. A specialist in Denver told my vet not to put her on prednesone until she is having jaw pain, the thinking being that the pain may never happen and prednesone is no treat to be on. I'm feeling rather helpless, and feel like I should be doing something, especially when everything I read about MMM says treat it early. Anyone have any experience with this?
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