I fell a few years ago and got a plateau fraction in my left leg. After the doctor put three screws in my leg, the break healed and I thought all was well. I started getting headaches and the doctor said maybe I had a pinched nerve. After not being able to control the headaches, the doctor did a radioactive bone scan. During the scan, they found the Paget's disease. Since then, my left leg has had a lot of deep, lower leg pain. At this time, my family doctor is sending me to see the bone specialist that did the surgery when I had the plateau fracture. They are thinking about taking out the screws and seeing if that helps my bone pain. Published: August 24 ::

10 years ago my husband, then aged 72, started getting severe pains in his left knee. I was told it is arthritis, take pain killers and rub something on it. The pain persisted and got worse. I asked for x-rays which suggested Paget's, a blood test confirmed this although doctor admitted an ALP reading of 330 would not normally have raised his interest. More x rays, bone scans etc. which indicated he had the disease in many parts of his body with the knee most troublesome. A visit to an endocrinologist confirmed all this, but he (specialist turned out to be less than helpful. There followed more years of pain, pills and an arthroscopy. He moved from using a stick to using an electric scooter as walking became more and more painful. Sleeping was difficult, he was in pain within 10 mins of lying down in bed. Pain relief was increased to a 10mg patch Norspan once a week plus osteopanadol and endone. I finally persuaded him to return to another endocrinolgist who suggested Aredia infusion. He had this 4 days ago & is almost pain free but given his age 82, is a little more confused than normal. We hope he will settle as he is now talking of taking short walks. He has also been given Lyrica to try if needed and is continuing to use his patch. I am so hopeful this treatment will give him some pain free time. thank you WE are from England originally migrated to Australia in 1950 Published: August 17 ::

I have just today found out that I have probably had Paget's disease for the last many years. I have seen my head, my jaw, my face, hands, arms, fingers, legs, feet and body slowly change into something that I do not really understand. I have had joint pain, muscle pain among many other things. I am now almost 79 years old and no doctor has ever mentioned anything about my bones. However, you can see that I have changed in many ways. I am having a bone scan and a cat scan for a biopsy on my back for a lesion, so maybe I will find out if it is Paget's disease as I am almost certain that it is. Published: August 17 ::

The first symptoms occurred when driving the car any long distance. My right femur used to ache, and I thought it was the seat at first. I had it for years (I was about 40 at the time, and I'm 66 now), then it seemed to get worse, so I had an X-ray and it was then it was discovered that it was Paget's disease. I cannot take antiinflammatory tablets, so I take a codeine-based medicine which gives me some relief. After all these years, it has not advanced any. When I stand up to walk, my leg does not work properly until I take a good few steps. I find it aches in bed. Published: October 05 ::

About four years ago, I was diagnosed with osteoporosis of the spine. My PCP started me on Actonel, which did not help. So, I was referred to an endocrinologist specializing in bone diseases. He started me on Forteo injections. After a year on this medication, my alkaline phosphatase levels went up to high levels. He then ordered a bone scan, which showed uptake in the skull area which is suggestive of Paget's disease. He immediately took me off the Forteo and ordered another skull X-ray. Published: October 05 ::

I have persistent pelvic pain in my right side. It was thought that the source of the pain was a vaginal cyst which was removed a month ago, but the pain persists. During the past month I have had extensive blood work, an X-ray, a CT scan, and yesterday I had a nuclear bone scan. The technician commented the pictures are consistent with Paget's. It makes sense to me, although I have not yet been formally diagnosed. I have scoliosis, arthritis in my knees and back, and severe lower spine compression. I have had multiple fractures, including a broken clavicle and stress fractures in both ankles over the years. I am disappointed this was not diagnosed earlier, but I am hopeful it can be treated with a combination of meds, physical therapy, and alternative methods such as yoga and acupuncture because I am only 58 years old and lead an active life. Published: October 05 ::

My pain originated in my right hip area. I hurt in my groin and then in my pelvic area. I have Paget’s in my right iliac wing. I was better for a while. I now suffer with pain on my entire right side, buttock, sciatic, hip, and groin. You name it, I hurt there if it's on the right side! Published: August 18 ::