Newsletter
Extracts from the September 2004 Newsletter
Opening Words
An autumnal sky on a brisk autumn’s evening in King’s Lynn.
And so the year marches on—when summer pleasures are gone and the cloudy days of autumn and of winter cometh on (to paraphrase John Clare).
The AGM has seen the election of an expanded committee but, as has been said oftentimes, it is your group and we, the committee, need your ideas, opinions and comments.
Since last writing, we have had the trip to Elgood’s Breweries (and very nice it was). The trip was only possible because our numbers were swelled by another group. We also enjoyed a cream tea afternoon at the home of Mary and Eddie Lyon. Thank you both.
There are other events approaching—the Dance at Gaywood, the Hunstanton Scanning Day and our main event, the eighteen-man Eddie Seales Big Band Show with guests at the Corn Exchange in November.
After discussion at the AGM it was decided that full membership should remain at £10.00 and that those who pay at each meeting should pay £1.50. This gives an incentive to those wishing to pay for the whole year (11 meetings) at one time.
As a group, we should be dedicated to going forward, being optimistic and striving for those things that help to improve the lives of people with or at risk of, osteoporosis. Apathy is, as the word describes, a way to nowhere. Let’s hope we have a comfortable season of mellowness and contentment.
From the Chairman, John Fludgate
New Drugs, Peripheral DEXA Scanning
Our Medical Adviser, Dr Norman Williams, from the Edith Cavell Hospital, Peterborough, came to update the group on progress with the Osteoporosis Scanning Service in Peterborough and on new treatments.
Dr Williams is always a very encouraging and entertaining speaker.
Whether you are 22 or 92 your body is dissolving old bone and making new bone. While you are alive, your bone is alive. So bone can improve.
Our Medical Adviser, Dr Norman Williams
When he came to see the group in June he spent some time talking about new treatments.
Firstly, we have all heard of the use of bone markers—tests that can be used to diagnose osteoporosis. He explained that he felt these tests—blood or urine tests—are not effective at the moment, but that they may be so in 5 years time. Tests and treatments are being improved all the time.
Repeated weight-bearing exercise and a calcium-rich diet are most important; drugs are just an adjunct to this.
Dr Norman Williams
There are three new treatments now available. Forsteo, Vertebroplasty and IV Pamidronate.
Dr Williams went on to explain these in more detail.
Forsteo
- Based on a synthetic version of the parathyroid hormone (also known as PTH)
- Licensed only for post-menopausal women with severe osteoporosis—two or more spinal fractures
- Prescribed only by hospital consultants - not GPs. Available in Peterborough. At present about 3 patients a year
- Administered by self-injection daily for 18 months (costs £10-11.00 per day)
- This includes a home-care system to support the patient at home
- Side effects include dizziness, leg cramps and nausea
- Research has shown a 90% reduction in the risk of moderate to severe spinal fractures, benefits still present 18 months after treatment; and bone mineral density can start to increase as early as three months after treatment starts.
This is the only treatment at present that works on the bone-building cells rather than slowing the rate of the bone-demolition cells.
Vertebroplasty
This is to correct cheese fractures in the spine. A balloon is put into the fracture area, pumped up, then something like a dental filling
is put in. This helps relieve acute nerve pain. The patient is then left for 6 to 8 weeks to see if natural healing occurs. Then he or she is given special exercises to help build muscle to strengthen the back.
IV Pamidronate
This is a phosphonate which is injected directly into the arm, every 3 to 4 months. This is given to patients who cannot tolerate the usual bisphosphonates, for example Fosamax or Actonel, because of a gut upset. This means just 2 to 3 hours spent in the day room at the hospital. No tablets to be taken in-between hospital visits.
And what next?
Researchers are looking at Strontium which would work simultaneously increasing bone formation and decreasing bone loss and a new bisphosphonate to be administered as a yearly injection.
Dr Williams said Your bone can always improve
, and comments from those present confirmed that. Several people had been monitored, told of their increased bone density, and their treatment then stopped or changed.
Wrist Scanning
Members asked Dr Williams what value he felt wrist scanning had. This was his reply.
Peripheral DEXA is a good indicator of fracture risk and excellent for monitoring treatment. The results need to be considered with other risk factors. If you are shown to be osteoporotic, then you should be given treatment; if you are osteopenic, then referred for a full DEXA (if in the mid-range and have a few other risk factors); if minimally osteopenic, then given lifestyle advice.
Dr Norman Williams
We were relieved to hear this, as the group has arranged another Scanning Day. This will take place on Saturday 9 October 2004 at 9.00 am to 5.00 pm at the Methodist Hall, Hunstanton, Norfolk. This time it will be by appointment only, so there should be no need to wait. We will be using Tony Bennett again, the Radiographer from the West Suffolk Hospital. Anybody who is interested should please contact the Secretary on 01553 773309.
UPDATE: the October Scanning Day in Hunstanton is now fully booked. Our next free scanning day is pencilled-in for April 2005. Contact the Secretary for more information.
NICE Guidelines
People with osteoporosis helped to prompt an adjournment debate in the House of Commons after so many members wrote to their MPs voicing their concerns about the NICE’s draft proposals. Our thanks to all of you locally who contributed to that lobbying.
NICE announced in February that it was splitting its appraisal of drug treatments in two—the first looking at recommendations for people who have already broken a bone (secondary prevention) with the second re-examining how to treat those at high risk of fracturing but whom have yet to break a bone (primary prevention). This second one is expected in October, possibly. NOS is satisfied, in the main, with these new guidelines.
Autumn Fundraising
This is just a reminder of what’s to come. Please check the full details of these forthcoming fundraising events on the Diary Dates page.
The Eddie Seales Big Band Show | November 23 2004, 8 PM
Our major fundraising event of the year. With Guests, at the Corn Exchange, King’s Lynn. Continue reading about the Show…
Recent Past Events We’ve Enjoyed…
Here are just a few of the handful of events we’ve organised and enjoyed recently.
The Life and Death of Edith Cavell | May 2004
Edith Cavell.
Mr Lee-Smith talked about the Life and Death of Edith Cavell. She was one of only three people in the Twentieth Century for whom the British people turned out in their thousands to grieve, as they did at her funeral. The other two were Queen Victoria and Princess Diana.
The story of her life and work, first as governess then as nurse, showed how much could be achieved by a determined woman even at a time when few women worked. In 1907 she was appointed matron at a new nurses’ training institute in Brussels. The institute went on to become a Red Cross hospital, nursing the wounded from both sides in 1914 during World War 1. This led Edith to help British and French soldiers to escape to the Dutch frontier.
In August 1915 she was arrested by the German Secret Police, tried and condemned to death. Later, in the same year that she was executed by firing squad, the Kaiser decreed “No woman to be shot”.
Her body remained in Brussels until after the war, not returning to Norwich, Norfolk until 1919. The whole story was very moving.
Elgood’s Brewery Summer Outing | August 2004
We were worried about filling the coach for our Summer Outing, but we joined with South Wootton WI. They were also considering going to Elgood’s Brewery. We teamed up, and filled 38 coach seats.
The weather in June may have been perfect, but August was very changeable, as you will know. It was raining on the way to Wisbech, and immediately after we returned. But we had perfect weather on the day, during the visit itself. Some people opted to just enjoy the gardens, while others took the brewery tour. Elgood’s is a classic Georgian Brewery, built in 1795, which has thrived for over 200 years. Long may it continue.
For those of you who couldn’t manage to attend, you missed a very happy occasion.
‘Blue Book’ Treatment
Orthopaedic surgeons often fix a lot of broken bones due to osteoporosis. They now have guidance from their professional association on how to properly assess for the fragile bone disease. The British Orthopaedic Association (BOA) has published its first ‘Blue Book’ on The Care of Fragility Fracture Patients.
Talking to Mr Nick Packer, Consultant Orthopaedic Surgeon at the Queen Elizabeth Hospital, King’s Lynn, the Secretary established that he sees many people who have had osteoporotic fractures, carrying out on average three hip operations per week. Mr Packer is very much in favour of an enhanced osteoporosis service locally. He would like to see a service here similar to that at Ipswich. So would we!
