PMR. Endocrine or Rheumatology Issue?

@kjoed53 what is LDN?

I was diagnosed with PMR in March and put on 25mg prednisone, which eliminated the hip girdle pain and tempered the shoulder and neck pain. I tapered down to 22.5mg in April, then I was diagnosed with SMM in May. I'm on a fast taper now and down to 12.5mg. I just started taking 3mg LDN for some relief of the anticipated return of PMR pain. The three nights I have taken it have been some of the best sleep I've had in months.

@kjoed53 that's interesting. Did the SMM diagnosis replace the PMR diagnosis? Is the idea that you no longer need to take Prednisone at all due to misdiagnosis? And is LND now the only medication you need? How did they ultimately decide it was SMM and not PMR?

Sorry for all the questions but the idea of other conditions presenting as PMR comes up often and seems to be one of the most difficult questions in an already difficult area.

@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.

@kjoed53 thanks for taking the time. Very important information to have. I have certainly had some very odd things happen to my blood markers since PMR arrived and was very ill last year. I was about to be referred to a hematologist when they found everything quickly returning to normal after I stopped methotrexate. In the end it was all put down to methotrexate toxicity.

@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.