Pagets Disease of Bone
Never heard of it? I'm not
surprised. It doesn't usually affect anyone under 50 after all. As
you may deduce, it's a bone disease. It's most prevalent in those of
UK and European descent (including those who settled elsewhere like USA or Australia) with those from Scandinavia or Asia being
significantly less likely to be affected.
Fun Fact: Pagets disease of bone is one of a couple of conditions, all named after the same person: Sir James Paget (rhymes with gadget), a super smart surgeon and pathologist who was a dear friend of Charles Darwin.
is Pagets Disease of Bone?
Bone cells are like any other
cell, they break down over time and need to be replaced, this is
called bone remodelling. Pagets disease of bone messes up the normal
bone remodelling process. Normally the old bone tissue is broken
down and new bone tissue replaces it. With Pagets disease more (and
larger) bone cells are made more rapidly - because this growth is
uncontrolled, the bone made is weirdly shaped and fragile as a
result. This fragile, misshaped bone can leave you in pain, more
prone to fractures and cause arthritis on the affected joints.
Pagets can affect one bone or a
few bones at once, in either a small area or the whole bone (but
thankfully doesn't seem to spread to normal bones) and tends to
affect the femurs (thigh bone), pelvis, shoulders, skull, spine and
tibia (shin bone). Pagets affects older people and
is seldom diagnosed in anyone under 50.
Symptoms of Pagets Disease of Bone
Pagets disease of bone has a
disturbing tendency to not have symptoms. Many cases are
only diagnosed by chance through x-rays and blood tests looking for
other things. For those who do have symptoms, they may show one (or
more) of the below:
Pain: either from the bone itself or from the way the altered bones put stress on your joints, nerves and movement.
Warmth over the affected bone: larger bone cells need more energy from your blood, where the affected bone sits near the skin (like the shin bone) this can make it feel unusually warm.
Headache and hearing loss: this would indicate Pagets has affected the skull and bone has overgrown.
Tingling, numbness and loss of movement: generally results from nerves trapped by bone overgrowth.
Bone deformity: as the bones weaken, they can bend (especially legs).
Enlarged and misshapen bones can
put stress on joints which leaves you at greater risk of arthritis.
Treatment for Pagets Disease Of Bone
There is no cure for Pagets
disease of bone (yet!), so treatment is all about managing the
condition. The aim of treatment is to relieve pain and prevent
progression of the various complications you could develop (like
doctor may recommend a type of drug called bisphosphonates,
these work to regulate the bone renewal and can ease the pain caused
Your doctor may advise you to
see a physiotherapist or an occupational therapist if you've been
having trouble with your movement as a result of Pagets. As no two cases are identical,
so too does the recommended treatment change.
You can help yourself by eating
a diet high in calcium and Vitamin D (you may need to start taking
supplements in order to get enough). Calcium and Vitamin D both aid
in the formation of healthy bone growth.
Foods high in calcium: Dairy
(low-fat ones, such as semi and skimmed milk, tend to have more
calcium), calcium enriched plant milks, fish that are eaten with
bones (like sardines).
Foods high in Vitamin D: Oily
fish (salmon, sardines, mackerel, herring), red meat, liver, egg
yolks, fortified foods (some fat spreads and breakfast cereals). The
best way to get Vitamin D is through skin exposure to sunlight, but
this is hard to do in winter.
Foods high in Vitamin D: Oily fish (salmon, sardines, mackerel, herring), red meat, liver, egg yolks, fortified foods (some fat spreads and breakfast cereals). The best way to get Vitamin D is through skin exposure to sunlight, but this is hard to do in winter.
Side Effects of Pagets Treatment
Many newly diagnosed people are
wary of the potential side effects of their medication
(understandable). Bisphosphates work by slowing bone renewal. They
are fairly well tolerated by the body, which makes the most common
side effect is an upset stomach. A single course of treatment can last
3-5 years of daily tablets (or just 1 injection!) and can last you
for years afterwards.
Side effects are usually minimal
and can include:
Heartburn (tablets only, only happens if you've not taken them correctly)
Sore Mouth (tablets only, happens if you've not taken them correctly)
Flu-like symptoms (more common with intravenous treatment)
Bone pain (more common with intravenous treatment)
Always report any side effects to your doctor (obviously) and they may change the medication.
The Pagets Association is the ONLY UK charity to solely focus on Pagets disease of bone, supporting, sufferers, health professionals and research into the potential genetic causes, historical tracking of Pagets and rare complications that can occur.
It was started by one truly
remarkable women, Ann Stansfield, who ran it nearly single-handedly
out of her front room for many years due to her husbands diagnosis of
Pagets disease and the little information available at the time.
marks Paget's Awareness Day, a day to raise the profile of this life
changing disease. Pagets may not yet have a cure,
but we're working on it.
Paul Tuck, Stephen; Layfield, Robert; Walker, Julie; Mekkayil, Babitha; Francis, Roger (December 2017). "Adult Paget's disease of bone: a review". Rheumatology. 56(12): 2050–2059. doi:10.1093/rheumatology/kew430. PMID 28339664.