Paget's disease 

An expert describes the various areas of the body that can be affected by Paget's disease, a condition where the normal cycle of bone growth is disrupted.

Learn about the causes of Paget's disease

Transcript of Paget's disease

Paget's disease is a relatively common bone condition

that affects the skeleton.

It could arise in one bone in the skeleton

or in several bones in the skeleton.

It's commonly found in the skull, the spine, the pelvis,

the hip and the lower legs.

It's a relatively rare condition in younger people.

But around about the age of 55,

it's found in about one to two per cent of white adults.

And this increases by the age of 80 when it's thought to occur

in approximately eight per cent of males and five per cent of females.

I've got it in my left tibia, the bone I've broken twice,...

...and in the right-hand side of my pelvis.

I'm very mindful of it. I'm not allowed to run, but that's no hardship

because I've never enjoyed sport particularly.

I'm not allowed to jar it.

I mustn't because it could break again quite easily.

The one thing that has ceased to be a pleasure is walking.

It's really a condition which is concerned with bone turnover.

We think about the bone as being a living, dynamic tissue

which is constantly being remodelled and renewed.

There are two types of cells involved in this process.

One type of cell is the osteoclast,

which is the bone that destroys the old bone,

then there is a type of cell called the osteoblast, which builds up new bone.

In Paget's disease, the osteoclasts, there are a lot more of them,

and they work very, very rapidly.

In response to this, the osteoblast cells also work very rapidly.

The result of this at the end of this process

is that the bone becomes much, much bigger.

You might think that that bigger bone means healthy bone.

But in this particular case, the inside is fragmented,

and it's much weaker, which is why it can easily break.

I don't have a lot of inconvenience.

I have odd twinges of being made aware that that is the spot that you broke.

In the front of my left tibia, I have odd twinges.

But I really don't have any pain.

One way of diagnosing it is by having an x-ray taken of the affected area.

But it can also be diagnosed on an isotope bone scan

which is when an individual has radio isotope tracer

injected into the blood which goes round the whole body.

If there are areas of Paget's in bones around the body,

these are highlighted as what could be defined as hot spots.

By looking at the result through a radio isotope bone scan

you can actually see areas of Paget's disease.

Another critical way of diagnosing it:

there is a substance released by the bone cells when they are overactive.

This substance is elevated.

That is checked very easily by performing a simple blood test.

One of the most interesting things about Paget's disease

is a lot of people have it and have no symptoms whatsoever.

It's sometimes discovered because they have an x-ray for another reason

or they have a blood test taken.

But for those people who do have symptoms of Paget's disease,

the most important symptom is pain.

The pain is often associated with a feeling of heat from the bone.

For example, if someone has Paget's disease in the shinbone,

if you hold the hand next to the shin,

you can sometimes feel heat coming off the bone.

In addition to pain, it is possible to have deformity

at the site of the Paget's disease.

And so, for example, if somebody has Paget's disease in the skull,

the skull will be larger than normal and the forehead can look flattened.

Similarly, if somebody has Paget's disease

in the lower shinbone or the hipbone,

the bone itself can actually bow outwards and distort.

Until about 30 years ago, there was limited treatment for Paget's disease.

People had to suffer the pain and deformity,

but then there was a group of drugs discovered called bisphosphonates.

These drugs are used it the treatment of a lot of bone disorders

and Paget's is one of them.

They are particularly specific to the activity of the bone cells.

They calm down the activity of the bone cells

and subsequently will reduce the bone turnover

which causes the pain and the problems.

(Elizabeth) My treatment's gone extremely well.

I've had various courses of bisphosphonates.

Three or four I must have had,

with this latest infusion, and it has, I think the term is, put it to sleep,

that it isn't progressing.

Gradually, each time after a course of treatment

your alkaline phosphatase will rise,

and when it gets to the level that they feel it needs treatment,

then you have another course of treatment,

be it tablets or infusions.

And so it goes on. You go up and it's kept control of.

In fact, there are slightly divided opinions about when you do treat.

In certain situations,

certain doctors would consider treatment even without symptoms,

because they feel symptoms will arise and therefore they should treat.

On the other hand, there is another school of thought

which favours the approach of let's wait and see,

let's see if and when symptoms do develop.

(Elizabeth) The most important thing is to see a consultant

who knows about Paget's, knows a lot about Paget's.

I know that the National Association for the Relief of Paget's Disease

will advise people on who in their locality

is, or knows about who is, an expert in Paget's.

I really think that is the most important thing.

I think very much the outlook these days is very optimistic.

Obviously, in the olden days, people weren't treated adequately.

They did develop deformity, they did develop fractures in the affected bones.

But I think importantly, drugs are available,

and provided somebody is adequately diagnosed and adequately treated,

they should be able to contain the disease and stop it getting any worse.


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