Due to normal CK levels I’m not on steroids and don’t want to go on them either.
But consultants are saying there’s no obvious signs of muscle weakness despite what I say.
I’ve noticed a weird shape around my muscle bicep on my left arm this past 4 weeks and can’t carry anything. I had my first physio appt yesterday and he’s confirmed I have muscle weakness and wastage in specific muscles and the changes in my left arm is wastage of my bicep. I’m also awaiting another lung function test as my breathing is difficult and I feel faint if I do anything as simple as walking.
It’s worrying me that Azathioprine will take months to help. Can I request IVIG as a quick fix to help me now? I know it’s expensive but hear it’s very effective short term and used a lot in the USA. Or are they likely just to offer me steroids which I don’t want?
What if I don’t have Polymyositis and I have IBM? I won’t find out will I until no immune suppressants work and then I don’t want to imagine the state I’ll be in and the potential muscle wastage 😢