Pagets Investigations Booklet A5x12pp (proof).indd

Paget’s Disease
INVESTIGATIONS
EXPLAINED
Diana Wilkinson
Specialist Paget’s Nurse
Paget’s Association
Version: 2
Revised: Sept. 2014
Review: 2017
Paget’s Disease
Scans, X-Rays and Tests Explained
The Paget’s Association has produced this booklet for anyone
who may have Paget’s disease. It provides information regarding
investigations which may be carried out.
What is Paget’s disease?
■ Paget’s disease is a chronic bone disorder that becomes more
common after the age of 50 when it occurs in approximately
3% of the population
■ It is caused by an increase in the activity of cells in bone, which
results in a disorganised bone structure that is weaker than normal
■ Symptoms range from none to pain, possible fracture and
deformity at affected sites in the skeleton
■ Once diagnosed the disease can be controlled effectively by
medication
How is Paget’s disease diagnosed?
■ X-ray
■ Isotope bone scan
■ Blood test
What does an x-ray show?
■ An x-ray of a bone may be performed if Paget’s disease is
suspected but it is often seen by chance when an x-ray has been
undertaken for another reason
■ An x-ray will show the presence of Paget’s disease in a specific
bone only and will not give any information about other sites in
the skeleton that may be affected
Paget’s Disease | Investigations Explained
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■ The x-ray picture will vary depending on the severity of the
disease but it is usually possible to see increased density and
sometimes change in the shape of bone
■ Fissure fractures (cracks) that can occur along the edge of
deformed bone
■ Complete fracture through an affected bone
■ May also show wear and tear in adjacent joints
X-ray of advanced Paget’s
disease in the shin
X-ray of a fissure
fracture in the shin
What is an isotope bone scan and what information
does it provide?
An Isotope Bone Scan is commonly performed to determine the
extent and activity of the disease. It involves an injection into a vein
of a small and safe amount of a mildly radioactive chemical called an
isotope. This travels to the bones via the bloodstream and after about
3 hours a ‘gamma’ camera scans the skeleton and produces an image.
Abnormal bone absorbs more radioactivity than normal bone, so
these areas are highlighted and picked up by the scanner.
There is no need to undress for this scan and apart from the injection
(similar to having a blood test), it does not involve any pain.
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Is it necessary to have both an x-ray and an isotope
bone scan?
An x-ray will only show Paget’s disease within the field of the image,
whereas a scan gives a picture of the whole skeleton and can show
whether the disease is present in several sites.
How often will an x-ray and
scan be repeated?
Front
Back
■ An x-ray may be repeated
occasionally to assess
whether or not the disease
has progressed
■ It may also be repeated if
there is increasing pain in
associated joints to determine
the severity of wear and tear,
particularly if joint replacement
surgery is to be considered
■ A further x-ray would be
performed if there was a
marked increase in pain at the
site of the disease. This could
be associated with a fracture or
extremely rarely with a type of
bone cancer called sarcoma
■ As Paget’s disease does
not spread to affect new
bones, there is usually no
need to repeat the bone
scan to determine the
extent of the disease
Front and back views of an
isotope bone scan, showing
Paget’s disease in the skull,
right pelvis and ankle, the
left hip, shin and shoulder.
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Are other types of scans used?
The following are not used routinely but may be performed
when there is doubt about diagnosis.
Magnetic resonance imaging (MRI)
■ MRI uses a strong magnetic field and radio waves
■ Produces detailed pictures of soft tissue such as ligaments
and muscles
■ Can identify fractures
■ Does not involve exposure to ionising radiation
Computed tomography (CT) scan
■ CT scanning uses several beams of x-rays at the same time
■ Produces detailed pictures, particularly of bone and provides
information about fractures
■ Uses higher doses of radiation than normal x-rays and would
only be used if there was a good medical reason to do so
Bone density (DXA) scan
■ Used to diagnose osteoporosis and not Paget’s disease
■ Measures bone density in the lower spine and hip
What blood and urine tests are performed?
Blood and urine tests alone cannot diagnose Paget’s disease
but when used in conjunction with scans, x-rays and medical
examination they help to confirm the diagnosis. They are also
helpful in measuring response to treatment.
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Alkaline Phosphatase
The most relevant blood test is one that measures alkaline
phosphatase (ALP) which is a substance produced by bone cells.
When Paget’s disease is active, more alkaline phosphatase is
produced and the level in the blood rises. If several bones are
affected the alkaline phosphatase level tends to be even higher.
Alkaline phosphatase is also produced in the liver and can be
increased if there is liver disease. The presence of liver disease can
easily be checked by further blood tests.
A blood test measuring alkaline phosphatase can be carried out at
a GP’s surgery or at a hospital clinic. Due to a variety of measuring
techniques, reference ranges may vary slightly between different
laboratories. This is something to be aware of if your blood is taken
in different hospitals / surgeries as it may be sent to different
laboratories. This should not however, cause any difficulties in
assessment of the disease. You can ask what your level of ALP is and
what the normal range is.
Additional Blood and Urine Tests
Additional blood and urine tests are available to measure substances
called bone markers that can also show the activity of bone cells.
These are not routinely available and may be performed only in
specialist hospital centres.
There are several different hormones, vitamins and minerals that
can affect bone. Examples of these include parathyroid hormone,
vitamin D and calcium, which may be checked in a blood test, if your
doctor thinks it necessary.
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How often will a test be performed?
■ Blood and/or urine tests will be carried out when the diagnosis
of Paget’s disease is first suspected
■ Treatment with a bisphosphonate (the main treatment for
Paget’s disease) usually causes a fall in alkaline phosphatase
level. Ideally, this should be measured six months after
treatment has been given, to assess the effectiveness of
treatment
■ Disease activity can be monitored by repeating the alkaline
phosphatase level on an annual basis and should be rechecked
sooner if pain recurs at the site of Paget’s disease
■ Blood and urine tests measuring bone markers will also be
repeated six months after treatment and thereafter on an annual
basis in a specialist centre
■ Other blood tests will be repeated if the original ones have
shown abnormalities
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The Paget’s Association: Here to help
The Paget’s Association is the only UK charity to focus solely on
Paget’s disease of bone. It acts as a resource for those with the
condition, the public and health professionals, offering high quality
information and support when necessary.
Information
Information available from the Paget’s Association includes
newsletters and booklets. Information is also available via the
k
Association’s website: www.paget.org.uk
Other information booklets available:
■ Paget’s Disease - The Facts
■ Paget’s Disease & Pain
Paget’s News
Our quarterly newsletter contains useful information regarding
Paget’s disease. To receive this and access other services provided by
the Paget’s Association you can join as a member either online or by
post.
Membership of The Paget’s Association
To join the Paget’s Association call 0161 799 4646 and request an
application form or register online at www.paget.org.uk
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The Paget’s Helpline
The Paget’s Association has a Helpline managed by an experienced
Registered Nurse.
Telephone: 07713568197
or call our office on
0161 799 4646
and ask to speak to the nurse.
Email: helpline@paget.org.uk
Write to:
The Specialist Paget’s Nurse
Suite 5, Moorfield House
Moorside Road, Swinton
Manchester, M27 0EW
For general enquires please call the office on 0161 799 4646
Paget’s Support Network
The Paget’s Support Network is available free to members of the
Paget’s Association, enabling communication by telephone, email or
letter, with others who have Paget’s disease. Contact the Association
using the details above.
Paget’s Online Forum
You can share your experiences or ask a question via the Paget’s
Online Forum. This can be accessed either from our website
www.paget.org.uk or www.healthunlocked.co.uk
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Pagets Association
Medical and lay trustees of the Paget’s Association have
reviewed this booklet.
The Paget’s Association holds references on specific sources of
information. Should you require these, please contact us.
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Paget’s Disease | Investigations Explained
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The Paget’s Association
Suite 5, Moorfield House
Moorside Road, Swinton,
Manchester, M27 0EW
www.paget.org.uk
Tel: 0161 799 4646
Registered Charity No. 266071