I have probably had Paget's in my right femur since 2004 but went undiagnosed until 2010 when it was found by chance on an Xray taken of my lower back, which just captured the femur in question. The pain in my femur was unbearable and no painkillers or NSAIDS could make it subside. I still had pain after two Zoledronate infusions given over a space of 2-years to control the disease. I eventually had my right hip replaced in 2014 and immediately achieved pain relief. I have been pain free ever since. I get my ALP checked every year and this suggests that my Paget's is in control. The pain I was getting especially at night was being caused from the arthritis created by the Paget's that had crept into my hip resulting in pain going down my leg.
I, like most patients, had never heard of the disease until they get diagnosed!
