Jim was shocked by his diagnosis 

Jim is 71 and from Virginia, USA. Here he shares his experience of diagnosis and treatment. 

My diagnosis was a complete shock.  Paget’s was discovered by chance in my pelvis, sacrum and spine (L5), when I had a bone scan for another reason. I was fortunate not to have experienced pain. My endocrinologist didn’t think of Paget’s, even with elevated blood levels of alkaline phosphatase (ALP) for twelve years, so I was lucky to learn of the condition before pain presented.  In researching the condition, I found few local resources. The paget.org.uk website and all the information it provided is by far the best. I joined the Paget’s Association and received yet more information.  A wonderful resource was/is email correspondence with Specialist Paget’s Nurse Diana Wilkinson who quickly answered all my questions. I also joined the Zoom sessions with a wonderful Paget's Support Group.   

My decision to have treatment with the zoledronic acid infusion () centred around two things.  One, could the infusion be beneficial to me?  Secondly, I was planning a tooth implant involving jaw bone. My decision was to wait for the infusion until my implant was well beyond successfully completed. Although information regarding the infusion to prevent future problems is scarce, I felt resources leaned towards it having a beneficial effect on the affected bones with few negatives.  The infusion was simple with the only side effect being fatigue for a day.   

Six weeks after my infusion my ALP test came back at 87, well within normal.