OSTEOPOROSIS - A PATIENT GUIDE

Awareness

Whether young or old, male or female, it is important to be aware of osteoporosis. This disease make bones so porous that they break very easily. It is now a serious epidemic in Britain, eventually affecting more than one in three women and one in eight men.

The growth of osteoporosis is truly alarming. There are now five times as many broken bones due to osteoporosis each year as there were in the 1960s. Every three minutes someone in the UK has a fracture.

Fragile bones, loss of height and fractures were thought to be just part of the normal ageing process, but research has shown that the average age of sufferers may be as low as 60, with thousands of women in their 50s already affected.

But the good news is that osteoporosis can be effectively treated and prevented in most people. To do so, we all need to protect our bones from childhood through to old age.

Symptoms

Osteoporosis means that bones have lost much of the calcium they need to remain firm and strong. The problem with this disease is that it goes unnoticed in its early stages; 30% of the skeleton may already have been lost by the time a wrist is fractured.

Often the first indication of osteoporosis is a broken hip, spine or wrist caused by a minor fall. Wrist fractures are common in men, and women in their 50s and more elderly people tend to break their hip. If bones are healthy they should not break as a result of a simple bump or fall.

If the bones in the spine become weak they may crush together, making someone shorter, and if several are squashed then a chronic backache is possible. However, sometimes just a loss of height or a stoop is noticed, with little pain or even no pain at all.

If the spine is very curved, breathing difficulties may be experienced because of loss of space under the ribs, the head may poke forward, and the stomach start to bulge. There may be problems with incontinence because loss of height makes other organs press down on the bladder.

Causes

Throughout life bone is constantly being removed and replaced by its cells. If these cells remove more bone than they replace, the skeleton becomes weak. Although osteoporotic bones may appear normal on the outside, inside they have large gaps in the structure which means that they will break very easily (rather like a building when too many supporting pillars are removed).

Normally bone grows from childhood through to the age of between 25 and 35, when it is strongest and healthiest. After the age of 35, bones will naturally start to lose some of the calcium which makes them dense and strong.

But during and following the menopause women start to lose more bone, some very rapidly. When the ovaries stop working at menopause there is a drop in the level of the female hormone oestrogen, and it is this that causes most osteoporosis. Younger women can get osteoporosis if they have a low level of oestrogen.

Men tend to have stronger bones to start with, and so suffer less from osteoporosis than women. Male sufferers may find that the cause is a lack of the male hormone testosterone, or it may be related to other physical problems.

Bones can be weakened by a prolonged period of immobility, and osteoporosis has also been linked to the use of corticosteroids (drugs which may be prescribed for the treatment of diseases such as rheumatoid arthritis).

Effects

Every year there are over 60,000 hip fractures resulting in more than 40 premature deaths a day. 50% of people suffering a fracture are permanently affected, and 20% die within six months. Many people suffer considerable pain, disability and loss of independence from hip, wrist and spinal fractures, and their quality of life is greatly reduced.

Financial cost

Currently in the UK almost a third of all orthopaedic beds in hospitals are occupied by patients with osteoporosis. The resulting cost to the NHS is estimated to be around £750 million a year.

Case studies

Jo Lye suffered severe back pain during the menopause. This pain became acute at the age of 57 when she had five spinal fractures within five months. Since being prescribed HRT her quality of life has improved enormously.

Mr Latter discovered he had osteoporosis when he broke his hip at the age of 66 after a minor fall. Since then he has fractured both shoulders and his right hip, lost five inches in height, and because of multiple spinal fractures has developed a stoop. He is being treated with etidronate.

Mrs MacLaverty had a very active, healthy life until she started suffering from back pain in her early sixties following a fall. She was diagnosed as having osteoporosis after an x-ray showed that she had crushed two vertebrae. She has lost two inches in height, but is now being treated with calcitonin.

Mrs Evans started taking HRT at 54 after she had had an early menopause at the age of 45; her mother had a stoop.

Shelly Clarke developed osteoporosis associated with pregnancy when she was 27. She started suffering severe backache when she was seven months pregnant, and following the birth of her baby she found she was unable to walk any distance. She had broken two bones in her spine. She is now being prescribed calcitonin.

Risk factors

All women and men are at risk from osteoporosis, but the risk is greater if someone has a low bone stock by middle age, or if bone density is lost early. Bone stock density can be measured by a DEXA (Dual Energy x-ray Absorbtiometer) bone scan at mid-life to estimate the further risk of fracture. This is currently the best way to determine the risk of osteoporosis but DEXA scanners are not yet available everywhere. However, there are certain risk factors that can be considered in order to help to identify potential sufferers.

These include:

• women who have had an early menopause before 45 or an early hysterectomy, especially if one or both ovaries were removed
• women who have suffered in the past from anorexia or bulimia nervosa; these eating disorders can lead to a very low calcium intake and intermittent periods
• women who have over exercised (e.g. competitive runners or ballet dancers); such activities can result in low levels of oestrogen as a result of the loss of monthly bleeds
• men and women who have already had a fracture after a minor fall; this is a danger sign that they are at high risk of having another one
• men and women who have lost height due to fracturing vertebrae in the spine; losing one or two inches is very common in osteoporosis and it means there is a greater at risk of having more fractures
• people who have been treated with corticosteroids for a long time
• heavy smokers or drinkers; alcohol prevents calcium being absorbed into the body, and tobacco causes low oestrogen levels and may result in an early menopause

If concerned that about being in one of these high risk categories, then read the rest of this text (including the sections on prevention and treatment), and discuss with a GP the specific factors which may increase the risk of suffering from osteoporosis. Even if this does not apply, continue reading, because everyone can benefit from advice on how to keep bones strong and healthy.

Action plan

1. Make an appointment to see the GP or practice nurse, to discuss past medical history, current symptoms, and risk factors which may indicate the possibility of osteoporosis.

2. The GP may wish to perform tests in order to offer the most appropriate treatment.

3. The GP may decide to measure bone density, to find out how strong the bones are, before agreeing treatment. He may wish to refer on to a specialist treatment centre for osteoporosis. NOS members can obtain information on centres where people can be referred. The NOS can supply a very detailed pack for GPs and practice nurses.

4. The GP, practice nurse, or health visitor, will also be able to provide advice on lifestyle, diet and pain relief.

5. Write to the NOS for advice and support. They will provide the latest information about osteoporosis and a list of booklets available. Some of the booklets are free to members, and ongoing information is contained in the quarterly newsletter. The society can also put people in touch with fellow sufferers..

Treatment

There is still no certain cure for osteoporosis, bones cannot yet be fully rebuilt once they have been badly damaged. More research is needed to find out what causes osteoporosis, and to develop new and better treatments. The good news is that osteoporosis can usually be treated and further bone loss prevented. A lot can be done to protect bone loss.

The treatment of osteoporosis depends upon age, sex, previous medical history, severity of the osteoporosis, and which bones have broken. Treatment is aimed at:

• preventing further bone loss and fractures
• providing pain relief
• improving mobility

Preventing further bone loss and fractures

Initially doctors will wish to check how badly you are suffering from osteoporosis before prescribing one of the following treatments:

• women under 65 are likely to be given hormone replacement therapy (HRT); this is an effective and safe method of preventing further bone loss, as it can restore oestrogen to pre-menopausal levels; women who have had a hysterectomy should definitely be offered HRT
• for women over 65 who may not wish to take HRT, and for men, there are a number of alternatives; spinal osteoporosis is often treated with cyclical etidronate; this has been widely prescribed in the UK for more than ten years so it is known to be safe; etidronate in the form of Didronel PMO is taken for 14 days, followed by a calcium supplement for 76 days; this cycle is then repeated and continued for at least three years; take the tablets only with water or juice, two hours before or after food, otherwise it will not be absorbed adequately
• a good calcium intake is helpful to bones, but on its own will not prevent or stop osteoporosis.
• a GP may prescribe Vitamin D on its own, or with etidronate, HRT, or calcium; vitamin D helps the body absorb calcium and so is a bone strengthener; even in the UK climate, most people gain sufficient Vitamin D by being outside for part of the day; it is also obtained from foods like cereals, milk, egg yolks, and salt water fish; people who find it difficult to get outdoors may need supplements
• men are sometimes prescribed testosterone to halt their osteoporosis, but they may need to referred to a specialist centre for tests and treatment
• at specialist osteoporosis centres consultants may offer other treatments which may not yet be available on general prescription, all of which have proved helpful, including calcitonin injections, nasal spray, fluoride, and anabolic steroids

For further information on treatments for osteoporosis please write for the NOS Treatments booklet.

Providing pain relief

Relief from the considerable pain of osteoporosis in the spine, and recovery from a broken hip or wrist, may be relieved by:

• physiotherapy; some hospitals have hydrotherapy pools in which the water is kept at a warm 98 degrees Fahrenheit; the warmth helps to relax tight muscles and joints, relieving pain and increasing mobility
• acupuncture; some people find this an effective means of easing painful joints
• simple pain killers
• calcitonin may provide short term pain relief
• at home, hot water bottles, or ice packs may prove helpful

Unfortunately treatments for osteoporosis may not always relieve pain but they do stop the condition from getting worse.

Improving mobility

Exercise is a very important part of the treatment of osteoporosis. Physiotherapy can help muscle strength to be regained during recovery from a fracture. Exercise also increases suppleness, maintains bone strength, and reduces the chance of falling.

Research has shown that osteoporosis is a preventable disease, and that there is a lot that can be done to keep bones strong and healthy. These preventative measures can also help existing osteoporosis sufferers. They include:

• exercise
• lifestyle and diet
• HRT for women after the menopause

Prevention concerns everyone - for those under 35 years old it is important to build up strong bones, and for those older than 35 the objective is to keep bone loss to a minimum.

Exercise

Weight bearing exercise, such as walking, makes bone stronger and also improves balance, co-ordination and flexibility, helping to prevent falls.

It is not necessary to become an Olympic athlete to protect the bones, three sessions of brisk exercise a week is recommended. Walking, dancing, playing tennis, and keep fit are ideal, but for those people who have not exercised for a long time it is advisable to start gently and do something enjoyable. Swimming is a good reintroduction to exercise; it increases mobility and naturally leads on to other exercise.

For further information about exercise that protects the bones, write to the NOS for their booklet.

Prevention
Lifestyle and diet

We all know that a balanced diet can generally help reduce illness, but an adequate intake of calcium is essential for strong, healthy bones. All adults are recommended to take the calcium equivalent of at least one pint of milk a day, but there are certain times in life when calcium is particularly important, i.e. during childhood and adolescence, during pregnancy and when breast feeding, and later in life. See the table below for recommended amounts.

Calcium is available in many foods, but the best sources are cheese, yoghurt and milk. Weight watchers need not deprive themselves of calcium, as skimmed milk contains more calcium than full fat milk. For a detailed list of foods containing calcium and some good, inexpensive recipes see the NOS Calcium Guide Book.

Do not forget other lifestyle issues, including a limit on alcohol intake, since alcohol abuse weakens bones.

It is also possible to take some simple steps to avoid falls, such as removing hazards like trailing flexes and loose carpets, having hearing and eyesight regularly checked, and maintaining fitness and balance.

HRT and the menopause

The link between low levels of oestrogen and the development of osteoporosis makes hormone replacement therapy a powerful means of preventing this disease. Following the menopause the ovaries no longer produce the oestrogen required for dietary calcium to be built into the bones, which may start to quickly lose their strength. Whilst the correct amounts of calcium and exercise are helpful, only HRT can provide the oestrogen which will protect bones from osteoporosis. Without it more than a third of women have a lifetime risk of fracture as a result of oestrogen loss.

It is important to first discuss taking HRT with the GP. All therapies have their risks and benefits and it may not suit everyone. HRT is not a new treatment; its safety record is well established, as it has been in use in the USA for 50 years and for over 35 years in the UK . Contrary to rumour, there is no increased risk of cervical cancer or cancer of the ovary with HRT.

Research has shown no increased risk of breast cancer for the first 10 years of treatment with HRT, and only a very small increase in women diagnosed with breast cancer after more than ten years of HRT. Doctors consider the benefits of HRT substantially outweigh any risk. Most women take HRT for less than ten years; five years is recommended for it to benefit heart and bones.

The advantages of HRT are many:

• women who use HRT for at least five years starting soon after the menopause reduce their risk of fracture by around 60%
• studies show that HRT significantly reduces the risk of heart disease
• HRT can eliminate menopausal symptoms such as night sweats, hot flushes, headaches and vaginal dryness

However, it is not without its disadvantages:

• some women may have monthly breast tenderness and temporary nausea, but these symptoms usually stop after a few months, or with a change of the type or dose of HRT prescribed
• most women will have a monthly bleed but this will depend on the type of HRT prescribed; with newer varieties the bleed may be reduced or even avoided
• women who have had a hysterectomy do not have a period

Types of HRT

HRT is available in the form of pills, patches and implants. Women who have had a hysterectomy will require only oestrogen but others will need 10 to 14 days of progestrogen as well , in which case monthly bleeds will still occur.

Fortunately there are lots of different types of HRT so all women are likely to find one to suit. It is worth preserving with HRT, because it needs to be taken for at least five years if it is to prevent bone loss. If thinking of taking HRT, write to the NOS for their detailed booklet on the menopause and HRT.

Self-help

Follow the NOS action plan if concerned about the risk of getting, or already suffering from, osteoporosis. If approaching the menopause send for the NOS booklet and discuss HRT with a GP. If already an osteoporosis sufferer, or someone wishing to support our work, join the NOS and find out more about the disease, how to cope with it and ways of improving the quality of life. See below for a full list of leaflets available. Put the advice on diet, lifestyle and exercise into action, in order to protect bones.

Helping others

Make sure that family members understand the importance of calcium rich foods and exercise. Watch out for daughters who may be over dieting, or have anorexia or bulimia nervosa, and are harming their bones. Talk to friends about osteoporosis so that more people become aware of this painful disease. Tell women friends in their mid 40s about HRT, osteoporosis and the NOS; they may wish to support the charity.

Join the NOS and help increase awareness of the disease. The NOS is a registered independent charity which relies on public and private donations to fund its fight against this serious bone epidemic. Make a donation to the NOS to fund research into the treatment and prevention of osteoporosis.

Work of the NOS

The NOS provides support and advice on all aspects of osteoporosis. Booklets are available on:

• HRT and The Menopause
• How to Cope for sufferers
• Hysterectomy and HRT
• Calcium Guide
• Exercise and Physiotherapy
• Fashion Guide for sufferers
• Treatments
• HRT and Breast Cancer

The NOS enables sufferers to meet each other in their local area and offer support to one another. The NOS is determined to raise general public awareness of how widespread and serious this disease is. It is particularly concerned with informing people about the preventive measures available to stop osteoporosis.

The NOS is committed to encouraging the medical profession, government, and relevant organisations to increase research into osteoporosis, in order to improve methods of prevention and treatment.

It has run a major campaign to bring osteoporosis to the attention of GPs, to assist them in the identification of potential sufferers. In the last five years a lot more has become known about osteoporosis. Considerable progress has been made thanks to the pressure that the NOS has applied, to increase awareness of the disease and to encourage research into ways of preventing and treating osteoporosis.

We still do not know all we need to know about osteoporosis. More research and health education needs to be done if this silent epidemic is to be effectively halted.

National Osteoporosis Society
P O Box 10
Radstock
Bath
BA3 3YB
01761 471771
01761 471104
01761 472721 (Helpline)