Hello all. Looking to hear from your experience. I have myositis (still haven't told me exactly what kind but seems to me to be polymyositis) with secondary neuromuscular dysfunction (mimics MS). I was diagnosed last Spring. So far I have only been taking prednisone as it is not as severe as most. Last time I saw my neurologist (neuromuscular), he agreed that this time around he would add an immunosuppressant (as prompted by my rheumatologist) so that I could start coming down on the prednisone. I am currently on 25 mg and have been on it since last April. I had been counting the days as it seems that prednisone is adding new problems on a regular basis - the latest being hair loss.
However, he was running very late this time around and seemed rushed. He said my strength in my upper legs had improved some so he did reduce the prednisone to 20 mg but still wants to hold off on adding an immunosuppressant. I was glad he said that, but I seem to be having flares with the myositis every couple of weeks. It will last a couple of days to even as long as a week and a half. I don't call him unless it seems to last a couple of weeks. Maybe I need to be calling more often? But I really don't want him to increase the prednisone.
He says the last two years he has seen a real increase with liver problems when using azathioprine. He's wondering if they haven't maybe changed the formulation in some way. Has anyone else noticed this? He's concerned because I had high liver enzymes last December but at the time, I had the flu and was taking a lot of cold meds. Since then they are back to normal and are actually good.
Just thought someone else might have been through the same thing? Thanks, Goldy