@gmdb
Sorry for the long post, but it's a complicated situation. I have PMR but my rheumatologist did a very thorough blood workup and noticed some other markers that also needed evaluation. He sent me to a hematologist/oncologist who did more blood work, a PET scan and a bone marrow biopsy. All these tests were done while I was on the prednisone, which suppressed the numbers but they were still high enough to indicate SMM. I have both and from what I understand, it is not unusual for people with MGUS or SMM to also have PMR. Since the prednisone suppresses the SMM indicators, I need to be off prednisone to know my risk factor for MM. In a worse case scenario, I could already be in high risk SMM or even active MM. There's no way of knowing exactly how much the numbers are suppressed. My rheumatologist didn't want to prescribe kevzara until the hematologist/oncologist signed off on it because it can also affect some SMM markers. That's why I was put on LDN while I taper down on prednisone. Ironically, it looks like my hematologist oncologist has signed off on it today so I need to speak with my rheumatologist tomorrow. Just in time as I'm on 12.5mg due to go down to 10mg on Saturday and I'm feeling more pain and more fatigue over the last two days. I won't stop the taper though because PMR is painful but not the risk that MM is, and I have to know exactly what I'm up against.