Information

Orpington Support Group

Contact: Penny

Tel: 01689 869570

Contact this group

pmrgca.orpington@gmail.com

Orpington Support Group meet on the second Tuesday of each month from 10am - 12 noon in the hall at St Paul's Church, Crofton Road. Tea and coffee is available.

Support groups are a really great opportunity to meet, with other and share information.

Location St Paul's Church, Crofton Road, Orpington, Kent BR6 8JE There is disabled access to the main church and hall.

Train - Nearest station is Orpington mainline station (trains from Charing Cross, London Bridge and Victoria or from Ashford, Sevenoaks and Tunbridge Wells).

Buses - If arriving by train at Orpington exit the station via Crofton (Taxi rank) entrance and cross the road to the bus stop facing up hill. Take a 61, 353, 654, R2 or R3 to the bus stop at Oakwood Road/St Paul's Church.

Parking - There is a church car park, if this is full there is ample street parking around the church. Please avoid block any driveway in Oakwood Road or elsewhere.

£4 entry - includes refreshments and contribution to hall hire.

Win up to £25,000 and support local groups in Kent - Hive Lotto gives us 50p for each £1 ticket you buy through our link  And when you win £25,000 Hive Lotto will give £25,000 for the benefit of those with PMR and GCA in Kent!   WOW!
Greater London What's On

Orpington Support Group - May 2020

Tue 12 May 2020
Victor Child's Room, St Paul's Church,, Crofton Road, Orpington, Kent BR6 8JE

High Wycombe Meet Up - May

Wed 20 May 2020
Wycombe Library, 1st Floor, 5 Eden Place, High Wycombe, Bucks, HP11 2DH

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Orpington Support Group

KENT: Orpington Meetings - POSTPONED

Please note that Orpington Meet Ups have been postponed due to Coronavirus.  As soon as we have any updated information on this, we will let you know. Keep an eye on this page, or email pmrgca.orpington@gmail.com 

Notes on talk by Dr Sarah Medley, Consultant Rheumatologist

I am going to basically talk about who is at risk of osteoporosis, how we assess, the types of treatment and calcium supplementation.

Osteoporosis
The way we define osteoporosis is two-fold; you can define it by the WHO definition (bone density scan) but also by the propensity for fracture, i.e. falling from a standing position, quite different say from falling from a horse.  However there are anomalies – normal bone density does not necessarily mean there is a low fracture risk.  Similarly, the majority of osteoporotic fractures occur in people with normal bone density!  It is your overall risk which matters.  Therefore it is very important to look at your risk factor.

Age:  As your age increases so will your fracture risk and this is really relevant with anyone who has PMR/GCA  because by definition the majority of people diagnosed with these conditions will be aged 50+

Sex:  There is a greater risk of osteoporosis in women after the menopause because  the hormone oestrogen decreases sharply, which can cause bone loss.

Previous fracture:  This will define your ongoing risk.  If you have broken a bone from a fall from standing, that is a wake-up call.

Family history:   Particularly in the case of parental hip fracture.

Smoking & alcohol:  Unlike age, these two factors are modifiable!  Consumption of alcohol is really important; 3+ units per day is not good for bone density.

Certain other conditions:  Mostly conditions which are inflammatory, e.g. rheumatoid arthritis, epilepsy, inflammatory bowel disease.

Physical activity:  The more weight-bearing exercise you do, the better for your bones.

Also if you are very slim, this is not good for bone density.

Steroid exposure:  Therefore because of all these risk factors there had to be a better way of defining who is at risk.  The FRAX Calculator system has been around for 5-10 years and is widely used by medical professionals.  However you can use it yourself online. By submitting age, gender, weight and height plus some yes/no questions relating to previous fractures, smoking, use of steroids etc. you can calculate your risk of fracture over the next 10 years.

Another section will present a graph showing coloured zones – red, orange and green .  If your result falls within the red zone you should be having treatment;  if orange, then a bone density scan should be sought.

[Question from the floor:  If you have had a fracture caused by an accident say, should that be included in the calculation?  Dr. M:  No – that type of fracture would not be counted.]

[Dr Medley also commented following another question, that the FRAX system had been based on many thousands of people and is therefore truly representative of the population - not simply those who might be at risk.]

Steroids and osteoporosis:  Steroids are bad for your bone density.  Taking 5 mg daily for three months is sufficient to affect bone density.  It affects calcium absorption and interrupts the body’s ability to make new bone.

DEXA (a bone density scan using X-rays) might be needed.

Calcium + Vitamin D is a good idea, or Biphosphonates may be needed.

Start treatment if you have had a previous hip or vertebral fracture.

FRAX assessment recommended otherwise.

For the first few months of treatment with steroids you have the most bone loss – your GP will be able to prescribe the appropriate treatment as above.

Treatment for osteoporosis:   Important to prevent bone loss.  Bones are under constant maintenance – old bone is taken away, new bone formed.  As we get older this maintenance becomes less efficient (especially in women after menopause).

Therefore medication is often used to stop bone being taken away.  Sometimes the medication is to help bone growth but this tends to be a new and more expensive treatment.

Biphosphonates stop bone loss.  Bone loss is a case of osteoclasts versus osteoblasts.  The osteoclast cells take bone away; osteoblast cells lay down new bone.  This process is happening all the time but as we get older the osteoblasts are unable to keep up with the bone removal, bone density lessens and the bone resembles ‘holey cheese’.  Oestrogen inhibits osteoclasts which is why after the menopause and diminished oestrogen levels, the osteoclasts are free to ‘gobble’ bone.  (See more on bisphosphonates below.)

[Question from the floor:  Is this why we lose height?   Dr. M – possibly, but might also be caused by fractures in the back (sometimes without our knowing).  A little
bit of height could also be lost as we get older because the vertebral discs are less bulky.]

Fracture prevention:

1.  Biphosphonates, e.g. Alendronate
2.  Denosumab (6-monthly injection)  Similar to Zolendronate.  Slightly more effective than tablets.
3.  Teriparatide – only used in certain circumstances, e.g. extremely severe osteoporosis.  A once-daily injection for two years with 65% reduction in vertebral
fracture but very expensive.

More on bisphosphonates

They have a long track record – very effective with low risk of serious side effects

However some problems can occur with poor compliance regarding the tablet form which is taken once a week – some people will forget to take it;  it has to be taken on an empty stomach with plenty of water;  you should not lie down after taking it because of reflux.

Pros:  Long track record – Effective with a 50% reduction of fracture – Less risk of side effects.

Cons:  Poor compliance – gastro intestinal side effects – Halts bone ‘turnover’

Drug ‘holidays’ are sometimes needed for bones to ‘get back to normal’.

What we want to do is to give you treatment which improves your fracture risk – that is the end-game.  Bone density is not the be-all and end-all  - what really matters is:

what is the condition of your bones and would a break from medication help?

All the medications mentioned act to stop the osteoclasts removing bone, but what you have left after five or more years of treatment is that bone density might be better but what you have in your body is slightly older bone and that is why a ‘holiday’ is needed

[Question from the floor:  How many years on this type of medication before taking a drugs ‘holiday’?
Dr M:  I would recommend treatment for as long as you are on steroids.  Probably, if you were on steroids for a very long time (which is not usual with PMR) but it is more the exception than the rule.  For PMR you would probably be taking steroids for 1 – 3 years.]

Question:  Apart from bone density what other factors cause a greater risk of fracture?
Dr M:  We have no idea – two people may have the same bone density but one will fracture and the other not.  There is still a huge amount we don’t know, but measuring bone density is the best indicator we have.

Question:  In what way does exercise strengthen bone?Dr M:  I can’t answer that – but we do know that weight-bearing exercise does help and is recommended.]

What about other factors?

1,  Eat sensibly – lots of dairy foods and Vitamin D
2.  Calcium and Vit D supplementation.
3.  Weight-bearing exercise – 30 minutes, three times a week.  Also skipping and brisk walking is recommended.
4.  Stop smoking
5.  Low or minimal alcohol intake.
6.  See your GP if you have stomach problems e.g. heartburn/reflux.
7.  Recommend a Vitamin D level check on a yearly basis.
8.  The Royal Osteoporosis Society has an excellent website:  www.theros.org.uk  It has a lot of information on diet, exercise etc. with exercises for people who      have had previous vertebral fractures.

How long to treat?
It is important to re-assess overall risk once steroids are stopped.  (FRAX, DEXA)

More on calcium
Calcium supplementation is good  and can decrease fracture risk by 10%.

Low calcium (hypocalcemia) is a complication of many osteoporosis treatments.

Calcium is essential for bone health.  It is better to have dietary calcium intake than supplements, so aim to have 700-1000 mg daily in your diet.  (One pint of milk gives you your daily requirement.)

[Question:  What about taking too much calcium?
Dr M:   It is hugely unlikely for you to have too much calcium if your intake is by diet.  Taking calcium tablets may raise levels, but don’t worry – if your level of calcium were to be really high you would feel unwell, e.g. tired, aching.]

[Dr. M also recommended the Royal Osteoporosis Society website (as above) for advice about various supplements and their efficacy etc.  She said “Just be careful with supplements!”]

Orpington Support Group 2020 Meeting information

2020

Orpington Support Group Meetings
Venue: Victor Child's Room, St Paul's Church,
             Crofton Road,
             Orpington,
             Kent BR6 8JE
Tiime: 10am - 12 Noon


DATES (TUESDAYS):

14 April - awaiting confirmation
12 May - James McHugh, Consultant Neuro-Ophthalmologist at Queen Mary's, Sidcup and the Princess Royal Hospital, Orpington. Talk and Q&A. Please book in advance if possible
9 June - Meet up for everyone and a chance for new members to meet everyone.

16th to 22nd June 2020 is PMRGCAuk Fundraising Week. The Orpington Support group is planning an awareness/fundraising event locally and we hope you will be able to support this. Further information will be posted soon.

14 July - awaiting confirmation

11 August - awaiting confirmation
 

8 September - awaiting confirmation

13 October - Dr Georgios K Dimitriadis,
                     Consultant Endocrinologist & Obesity Physician

10 November - Following the meeting we will have our 3rd annual
                         'The Extremely Early Christmas Lunch'
                         at The Black Horse in Locksbottom.

No Meeting December
 
Wherever possible you are asked to book in a week ahead of meetings but never let that stop you from coming! Support Groups and Meet Ups are open to all with polymyalgia rheumatica or giant cell arteritis, their relatives and friends. 

Orpington Support Group welcomes new members

The meeting is an opportunity to share information about the conditions and find out how others manage.

Members who attend regularly also attend local pilates groups, do Nordic walking, Tai Chi and more. They are always happy to share relevant information. We welcome new members so if you haven't been before please come and join us for a cup of coffee and find out more.

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