Patient Comments: Paget's Disease - Symptoms


The symptoms of Paget's disease vary from patient to patient. What were the symptoms at the onset of your disease? Submit Your Comment

Comment from: Greg, 55-64 Male (Patient) Published: October 03

I had persistent pain in my right shin bone and I asked for an x-ray. My doctor wanted to wait until he noticed in a report from a previous blood test I had elevated something that indicated liver problems but scans of liver were fine. He said that the same elevated something may also indicate Paget's disease. X-ray and scans confirmed Paget's disease in my pelvis. It was suggested that the pain in my shin was preferred pain form pinching a nerve where it passes through my pelvis.

Comment from: Micheleen hancox, 55-64 (Patient) Published: September 26

I have Paget's disease, it has affected my skull badly, and it feels like it is in a vice grip. So are my neck and lower back. I have to push myself up to stand straight, my pelvis I sometimes cannot move. Shoulders are bad and so are hips and knee. I had muscle breakdown some years ago but really battling. I am also putting on weight, very high cortisol levels. Battling with the pain.

Comment from: Dee, 75 or over Male (Caregiver) Published: May 14

My uncle had hip pain that took him off his feet. Initially they thought it was sciatica but following a fall he had a hip x-ray which showed a thickening of left hip bone. He had prostate cancer some years ago and it's at one of the sites he had radiotherapy. They indicated his cancer may have returned but now without oncologist seeing him they have diagnosed him with Paget's disease and are doing a blood test to confirm.

Comment from: Timarie, 55-64 Female (Patient) Published: January 17

I have pain in my right hip. I had arthritis in my right knee and when the physician's assistant (PA) decided it was time to take x-rays I suggested we x-ray my hip as well because I would suffer at times from awful, throbbing pain all the way from my hip to my foot. The PA diagnosed me with Paget's disease and scheduled a bone scan. The next day I was scheduled to see another doctor in the same practice to inject my right knee and he convinced me I didn't have Paget's disease, but it turns out I have it in my right pelvis, my right hip, clavicle, femur, skull, and lower back. It is very painful at times and I am not able to take aspirin as my kidneys cannot tolerate it.

Comment from: Shady, 45-54 Female (Patient) Published: September 09

I've just seen my general physician after having x-rays for the third time for extreme pain in my right groin. This started in April of 2015. The pain was so bad I was unable to move my right leg. The x-rays came back and my doctor is sure I have Paget's disease as two more fractures have been found. I have one in my upper right arm, which is painful not to mention frustrating as I am right handed. My problem is the fact that I am highly sensitive to most medicines as well as vitamin supplements. I react very badly to vitamin D and all other vitamins. I know I won't be able to tolerate treatment and won't even try it. The reactions I have are at time torturous and I will not put myself through anymore suffering. As it is I cannot shower myself and need daily care. I have arthritis on top of everything else.

Comment from: Jack, 65-74 Male (Patient) Published: November 29

I served in the Air Force from 1962 to 1966 as an Air Police K9 security handler and of course training these dogs to be vicious, I was bit several times by just about most of the dogs being trained, in spite of wearing an attach suit and sleeve. Five years ago in 2011 I was diagnosed by the Veterans Administration (VA) physician as having Paget's disease and of course claimed disability due to my training these dogs. From what I have read is that the canine distemper virus (CDV) has been proven to be responsible for those cases diagnosed with Paget's. I am still waiting for my appeals; after 4 years of submitting to The VA.

Comment from: Sweetie, 55-64 Female (Patient) Published: August 24

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.

Comment from: robyn l, 45-54 Male (Caregiver) Published: July 07

My husband has suffered with osteoporosis and headaches for years and has also had many fractures over the years. He is now developing lumps on his skull from Paget's, and debilitating headaches that never stop even with heavy opioid pain medications.

Comment from: Kishore Pothuri, 65-74 Female (Caregiver) Published: November 16

The calcium levels in my mother were always going down, even after giving daily dosage of calcium tablets. She got fits due to low calcium. Then doctors started calcium spray as her body was not able to absorb calcium from tablets. After that the doctor doubted that there's something wrong going on in her bones, for which they have done a bone scan and identified that it's due to Paget's disease.

Comment from: Martha, 65-74 Female (Patient) Published: October 20

I had severe spinal pain from my head to my tail bone. Severe headaches on one side of the head, and my ankles would turn suddenly. I am allergic to many meds, including ANY aspirin products, so I now wear braces on both ankles, and get epidurals every three weeks in the neck area to quiet the pain in my back, arms and head. Now, I'd sure like to stop the ringing in my ears that has been there for over 25 years. I am a 73 year old female. Thank You.

Comment from: Robert, 55-64 Male (Patient) Published: January 31

Well, the first symptoms were an occasional sharp pain in the groin area or the right hip. I had a check at the hospital, had to swallow barium. That showed a black area from my lower right calf up to my waist. The left side had about half the black and I don't really have any pain there. I recounted a dog bite I'd suffered as a 4 year old and the doctor said that might be the cause. He said whilst it's not curable we can slow Paget's down. I'm now 64 and the pain on my right side will only allow me to sleep for maybe an hour and then the pain wakes me up forcing me to turn on my left side. So I sleep badly and also without warning I can get a searing pain in the groin area which makes me see stars! Also the doctor told me that one leg is shorter than the other. So, it's something I have to put up with.

Comment from: Phyllis P., 65-74 Female (Patient) Published: November 01

Diagnosis confirmed by open biopsy per cervical spine #6. Mass on cervical 5, 6, and 7. Symptoms prior were left neck pain, left arm pain with shooting pains down the arm at times, numbness in little and ring finger. Four years prior, Paget diagnosis in right femur. Recent test results and diagnosis all led to cancer of the spine per bone scan, MRI, CT scan and PET scan as the uptakes were very high. I have history of over 35 years of cancer. Thankfully, neurology surgeon did the biopsy!

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: 1969, Male (Patient) Published: December 08

I would like to share my story, and any insight would be appreciated. I had herpes test in November, tested positive for having 1, but not HSV (herpes simplex virus) 2. My index was 2.50. I read that between 1.1 and 3.5 is false positive, and over 3.50 is definitely positive. I have never had an outbreak. I was tested in 2014 and both were negative. Within 2 years I tested positive for 1. I am so confused. I have read everything I can and can't get any definite answers. The doctor just accepted the test as positive because that's what it concluded.

Comment from: Catherine, 55-64 Male (Caregiver) Published: February 26

My brother is 62 and has been diagnosed with Paget"s disease of the right ankle. He has had a brace and is taking calcium, they are now suggesting a plate be put in his ankle, because it gives out on him and is causing pain. His job is in maintenance at a local hospital, he is a little mentally challenged. I"m afraid the operation will force an early retirement. He fails to ask the right questions when seeing the specialist.

Comment from: Mario Batiz, 45-54 Male (Patient) Published: May 21

I the past two months, I have seen three doctors, who have given me three different diagnoses., including back pain, spinal stenosis and a possible tumor in my spine. Most recently I went to a rheumatologist, who said I have Paget's disease. I've had X-Rays, an MRI, a CT scan, and a bone imaging scan. The last CT scan involved drinking two bottles of magnesium, plus an IV ink to enhance the bones on the test. I guess what I'm really wondering is, what type of doctor should I be seeing for this condition?


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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: 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.

Comment from: Susie, 65-74 Female (Patient) Published: April 12

In the 1990's I had pain in the lower back when lying supine. Also I had soft tissue swelling at the 5th lumbar vertebrae. Alkaline phosphatase not elevated because of the limited area of bone involved. An MRI showed abnormal appearance to the posterior elements and perineural foraminal bone at the L-5 level. My father had non-symptomatic Paget's Disease of the bone.

Comment from: Carri, 75 or over Male (Patient) Published: March 23

I had terrible pain in my left butt, thought it was my sciatica. My doctor had me take an x-ray and that is how my Paget's disease was discovered. That was over 1 year ago and now I am followed by a bone specialist.

Comment from: Sonia, 65-74 Female (Patient) Published: January 06

I was suffering a lot of lower back pain and went to a chiropractor. When it didn't help me, he took x-rays and sent me to an endocrinologist. That was when I was 52 years old and diagnosed with Paget's. My alkaline phosphate levels were elevated and my back felt inflamed. The Doctor tried me on calcitonin which gave me severe headaches. He then tried pamidronate intravenously which really helped since I also have ulcerative colitis. I had that treatment twice but it has been a while since I last had it and am now finding that my pain is back with a lot of back pain and tingling down my legs.

Comment from: bone yard, 45-54 Male (Patient) Published: December 27

My hip was always aching ever since I was 25 it felt like low back pain with my upper front of my thigh going numb at times. I always stood favoring my good leg. Paget's was found at age 50 when I fell off a roof and broke my hip.

Comment from: Spencer, 55-64 Male (Patient) Published: December 06

I was wrestling with my brother and my bone snapped between my shoulder and elbow. Since then, I have broken that bone 5 times. It is now deformed with an outward curve. I was diagnosed with Paget's after the second break and I am currently seeking treatment for the disease, not just the broken bone.


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Comment from: mason, 55-64 Female (Patient) Published: November 04

Constant headaches around the temple area, crown of head, and now the pain is located behind the right ear, extending to base of the hairline and around the neck.

Comment from: maaduke318, 45-54 Female (Patient) Published: November 03

I have been having quite a bit of neck pain, pelvic bone pain, and now other joint pain, rapid heartbeat, not able to sleep, headaches, weight gain and general pain throughout my bones. I am concerned because I had a brother with Paget's disease and he had similar symptoms. My eyesight is also getting worse. When I spoke to a doctor about this, he tried to brush it off as depression. I am NOT depressed. What is the likelihood I have Paget's and how do I get a doctor to listen to me without thinking it's all in my head? I also have a lot of nausea. I did have a hysterectomy about 2 years ago, but some of these symptoms started before that.

Comment from: jackie, 55-64 Female (Patient) Published: October 27

I have osteoarthritis. I have had it since I was 37 and just had a small stroke and now I have had blood tests for Paget's disease. I am going to have a bone scan. I had problems with my knees when I was ten and the doctor called it rheumatism then my mother had rickets when she was fifteen.

Comment from: 55-64 Female (Patient) Published: October 13

I believe the initial onset was in my late forties. I was not able to sit without pain. It disappeared. I sought no treatment at the time. Since then I've have numerous back problems, including sciatic. A recent x-ray revealed Paget's of the sacrum and coccyx. I'm not entirely sure if the back problems are related to the Paget's, as the Paget's was diagnosed as mild.

Comment from: Mack6, 65-74 Male (Patient) Published: September 23

I experienced a headache right above my right eye. It was a throbbing pain, and it came on just about 3:00 PM every day. It usually lasted about 5 to 6 hours. I found that if I retired for the night. It would be gone in the morning, only to reappear about mid afternoon again. I am retired and have been for 5 years. I do not perform any unusual activities, although I do watch more TV than I used to do.

Comment from: oneday at a time, 75 or over Male (Patient) Published: September 20

I was 55 when I started seeing a small town doctor for back, hip and head pain. I was told [over 5 years.] that I had arthritis. My pain gradually became so intense [I describe it as exquisite]-unbearable. He finally had my blood samples sent to a internist who found I had Paget's. I was put on a cancer drug intravenously [didn't help much] and about 5 years later injected with Aredia. I am told I had Paget's About 15 years before they found it. I have a deformed clavicle, deformed legs, deformed skull, 5 narrowed spinal discs. I have been on 60mg. weekly for 7 years and have taken myself off just recently. My alkaline phosphate reading is normal. I am now 81 yrs. old

Comment from: 45-54 Female (Patient) Published: September 20

Before I was diagnosed with Paget's, I had severe burning sensations in my legs and face. I would wake up in the middle of the night feeling like my entire body was on fire. My head would be pounding and my hair would be drenched with sweat. My lower back would be in constant pain along with my hips und upper thigh area. This burning sensation does not go away.

Comment from: Tina, 65-74 Female (Patient) Published: August 20

Numbness on the right side of my face was my first symptom. Treatment with 40 mg of Flosomax per day was unbearable/headaches were very painful. Now, treatment of 30 mg every other day of Actonel only causes leg and thigh cramping.

Comment from: charmers, 55-64 Female (Patient) Published: July 13

I already had back surgery L4/5 titanium pins plate in and had dreadful pain every day even when taking narcotic meds. Something changed. I got muscle fatigue extreme, hard to walk or even stand, then came weird sensations on my head it is hard to describe maybe like pins needles. The doctor was right on the ball and I had tests for Paget's he was right, now I am filled with dread as to what next step is! I only just got results. That is why I am looking at this website, what is next!!!

Comment from: rrhouse123, 65-74 Female (Patient) Published: January 05

I am 66 years old I took a fall a couple of years ago and got a hairline fracture in my left hip, but I seemed to hurt all over in different areas at different times. I had trouble standing up straight and walking problems. They ran tests and found Paget's. Years ago I was in car wreck and crushed my pelvis, chipped 3 vertebrae in spine and other related problems, but I never had any trouble for over 30 years. Now all of a sudden I find I'm having all kinds of problems and a lot of pain. Due to stomach problems all I can take is aspirin and it really seems to help. I get a lot of migraines and my eyes seem to be bothering me a lot more. I was told this could turn into cancer.

Comment from: sriker, 45-54 Female (Patient) Published: August 18

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!

Comment from: J. Shields, 65-74 Male (Caregiver) Published: January 24

My father has had a limp and atrophy in his right leg that has progressed over the past 15 years. None of the doctors that he has seen has offered a diagnosis. His last blood test showed elevated alkaline levels, so they did a CT scan and found that he tested positive for Paget's disease in his pelvis. Would this cause the atrophy? Should he have a CT scan of his entire body to see if it is in any other area of his body? I am just wondering.

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