Patient Comments: Paget's Disease - Symptoms

Question:The symptoms of Paget's disease vary from patient to patient. What were the symptoms at the onset of your disease?

Comment from: Deedee, 55-64 Female (Patient) Published: October 21

Ten years ago I fell. I was then treated for having a plateau fracture. I had three screws put in, and I thought that was the end of it. For the last three months, I have been suffering from severe lower leg pain. After going to my doctor numerous times, he found Paget's disease. He told me he needs to research the disease to find the best treatment. I am experiencing severe hot burning pain in my lower leg bone.

Comment from: nosypat, 75 or over Male (Caregiver) Published: August 17

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

Comment from: jean, 75 or over Female (Patient) 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.

Comment from: Bebe, 65-74 Female (Caregiver) Published: March 16

Dizziness and a horrible vertigo.

Comment from: Joanekins, 55-64 Female Published: October 05

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.

Comment from: 55-64 Female (Patient) 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.

Comment from: currently glowing, 55-64 Female (Patient) 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.

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