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DiscussionMGUS and Susceptibility to infection
Blood Cancers & Disorders | Last Active: Jul 17 9:45am | Replies (24)Comment receiving replies
Replies to "@rosoto totally agree. the doctors seem happy to downplay my actual experiences that don't align with..."
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@jinfresno
I'm 73. I was diagnosed with PMR in March after symptoms started slowly six months earlier, and SMM in May of this year. I started 25mg for the PMR but it never fully relieved my shoulder pain or fatigue. My rheumatologist thinks that I'm having SMM pain, but since my PET scan was clean my hematologist-oncologist doesn't agree. I've been tapering off prednisone since my SMM diagnosis and I'm currently at 6.5mg and waiting for the kevzara approval process to play out. My rheumatologist still thinks that I either have SMM pain or some other undiagnosed disorder. I'm pushing myself to get off prednisone so that my true SMM numbers can be evaluated. Maybe then my hematologist-oncologist will see something that didn't show on prednisone. I'll also push for another bone marrow biopsy. Sometimes doctors only think in terms of classic symptoms. Many of us don't fit in that pigeon hole.