Not long diagnosed but symptoms getting worse over weeks not months. Mycophenolate I couldn’t tolerate so waiting to hear from bloods if I can have another immune suppressing drug.
Asked specifically which I have to be told again it doesn’t matter they’re all treated the same. But I’m not text book so probably poly and I’m not a man over 50 for IBM.
I’m scared and think I have IBM. I now think I’ve had Myositis a number of years and I’m really feeling the effects this past 18 months especially recently. How can you find out which one you have? Why have toxic drugs that won’t work if you have IBM? Or is it trial and error.
I so wish this forum was more active and Myositis is such a scary disease to have and experience! I feel scared isolated and alone. I can’t work, have high anxiety, and the pain is getting work and affecting my mobility. I’m getting weaker and weaker yet look healthy, so feel no one is listening to how bad I feel.
If I knew what I was dealing with maybe it would help me x