A beginner’s guide to Paget’s disease

Unlike the lifeless skeletons you stared at in science class, bones aren’t just static structures that hold you up. They’re made of living, breathing cells. And they’re always changing. Even as you read this, old or damaged bone is being reabsorbed while new bone is laid in its place.

This remodeling helps bones adapt to our demands and heal injuries, and it prevents them from becoming brittle. In fact, adult skeletons are fully replaced about every 10 years, according to the American Academy of Orthopaedic Surgeons.

As we age, the process naturally slows down. (Just think of how kids heal from fractures so much quicker than adults.) But in Paget’s disease, new bone growth is disorganized and takes place faster than it should, says Alana C. Serota, MD. She’s a physician in the Department of Metabolic Bone Disease at the Hospital for Special Surgery in New York City.

The result? The rebuilt bone can have an abnormal structure. It can be weaker, putting you at risk of broken bones. It can also be rebuilt too large, which raises the chance for complications such as arthritis, bowed arms or legs or even hearing loss.

Paget’s disease has no cure. But effective treatment can ease symptoms. Here’s what you need to know about this bone disorder.

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Who gets Paget’s disease?

“Between 1% and 2% of people over the age of 45 have Paget’s,” says Michael McKee, MD. He’s a professor and chairman of the Department of Orthopaedic Surgery at the University of Arizona College of Medicine Phoenix. He’s also a surgeon at Banner University Medical Center in Phoenix.

It’s uncommon to develop Paget’s disease before the age of 40, adds Dr. McKee. And men are slightly more likely than women to be diagnosed with it.

The cause of Paget’s disease is unknown. But it does seem to run in families. In 30% of cases, there’s a family history of the condition, Dr. Serota says. While Paget’s can affect any ethnic group, it’s more common in Europeans and their descendants.

What are the symptoms of Paget’s disease?

Surprisingly, many people may not know they even have it. “Most people don’t have symptoms when they get Paget’s,” says Dr. Serota.

Paget’s disease can be widespread, or it can affect only 1 or 2 bones. “The most common bones affected by Paget’s are the spine, skull, pelvis and lower legs,” says Dr. Serota. If there are symptoms, bone pain is the most common. But the experience will likely depend on where the disease strikes.

• Spine: Compression of the nerve roots can cause pain, tingling and numbness in an arm or a leg.
• Skull: If the skull grows too large, it could cause hearing loss, headaches and even loss of vision.
• Pelvis: Weakness or abnormal growth here could cause hip pain.
• Lower legs: As the bones weaken, they may bend and bow. Enlarged and misshapen bones can put extra stress on nearby joints, which may cause osteoarthritis in your knee or hip.

Related reading: 5 ways to treat stiff and achy joints.

How is Paget’s disease diagnosed?

Start by seeing your primary care doctor if you have bone pain or any of the symptoms above, says Dr. McKee. They can help you rule out other causes. If your symptoms aren’t due to another condition, you may be sent to a bone health specialist.

Once there, they may do an x-ray. It’s the most useful test for Paget’s disease, says Dr. McKee. “Paget’s has a very characteristic look, so it’s easy to see,” he explains. “If there is still any question, you may be asked to get a bone scan to confirm.”

A blood test can also be used by a doctor to confirm the diagnosis. It’s called an alkaline phosphatase test, and it measures how fast bone is turning over.

What kind of treatments are available?

If you don’t have any symptoms (and it’s not impacting your skull or spine), you may not need treatment at this time, says Dr. Serota. But your needs may change because Paget’s is a chronic condition that slowly progresses over time.

Fortunately, it can be managed with medication, healthy lifestyle habits and, in some cases, surgery.

Medications called bisphosphonates are the mainstay of treatment, says Dr. Serota. Examples are ibandronate (Boniva®) and alendronate (Binosto®, Fosamax®). These are the same prescription medications given to people whose bones are weakened by osteoporosis.

For pain relief, you may be told to take acetaminophen or a non-steroidal anti-inflammatory drug (NSAID) such as ibuprofen. (Can’t take NSAIDs? Here are other ways to find relief.)

In more severe cases, surgery may be beneficial. “Surgery could be needed for a joint realignment or replacement or to reduce pressure on the nerves,” Dr. Serota says.

Fitness and fall prevention are important for everyone, but especially for people with Paget’s disease. “A regular exercise program with an emphasis on balance can be overseen by a physical therapist or exercise physiologist,” explains Dr. Serota.

You can also ask your provider about assistive devices, such as a walker or cane, and about fall-proofing your home. This might include grab bars in the bathroom and nonskid mats in the tub or shower.

The good news, says Dr. McKee, is that doctors are getting better at treating Paget’s disease. So don’t hesitate to get checked if this bone disorder runs in your family or you have any of the symptoms above.

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Additional source
Bone health basics: American Academy of Orthopaedic Surgeons