interesting article from today’s Guardian about osteoporosis

[Hidcote]

theguardian.com/wellness/20...

some interesting stuff about osteoporosis

[123-go]

Thank you for posting this: I found it fascinating! Being able to ask the right questions and to know how to research your own condition is paramount but not readily available to the layperson but what we can all do to help ourselves is question, ask for or research relevant reading material and become a member of a support group like PMRGCAUK where there is always someone to point you in the right direction and also patiently explain anything that’s difficult to understand. Oh! I forgot one of the most important aspects-having access to a doctor/specialist who is interested in you as a person as well as your illness, who will listen and, of course, have relevant expertise and ‘people skills’.

[powerwalk]

Thanks for this. Im exhausted just reading it! It really is a minefield the whole osteoporosis thing. I always thought it would be the rheumy that would look after it. Seeing a new one in few weeks and dreading it. Maybe she'll send me off to someone else! Thank you.

[DorsetLady PMRGCAuk volunteer in reply to powerwalk]

Difference health set up in North America -and too many fingers in same pie.. in my view. As PMRpro says -little accountability.

[powerwalk in reply to DorsetLady]

Absolutely.

[PMRpro Ambassador]

I read this last night - the biggest message I took from it was what a mess US healthcare seems to be and how no-one takes responsibility if they can wriggle out. In the UK a rheumy WOULD be a usual point of contact.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Too many cooks -and from what we read on here not many Michelin star ones…

[PMRpro Ambassador in reply to DorsetLady]

Trouble with Michelin stars is they sometimes lose sight of the basics!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Very true!

[tangocharlie in reply to PMRpro]

But, the local branch of the ROS is hosting a zoom on osteoporosis lead by Dr Abbass who is an endocrinologist at Leeds. And many of the women in the local group with osteoporosis see him rather than rheaumatology, so I don't knw where the dividing line is. Maybe if like me you already see a rheumie they continue to treat you but if not you go to an endo?

[PMRpro Ambassador in reply to tangocharlie]

More likely what is available where you are. Leeds is quite unusual with collaborations between rheumatology and endocrinology - and no doubt other dpartements.

[tangocharlie]

Thanks for posting I've only had a quick read so far but it's very interesting and a lot to take in there. I've recently suffered spinal fractures which I'm told are due to osteoporosis yet my DEXA scans have always been normal. Everybody says it must be down to the Pred but it might not be if 1 in 2 women get it anyway? So many questions I'm trying to find answers to. I do think it's something all post-menopausal women should know more about

[tangocharlie]

Also this highlights a great myth as she says a lot of things we thought were right turn out to be wrong - people think that a DEXA scan looks inside your bones to see if they are good - they don't. They give a rough indication of bone quantity compared to what you would expect a 30 year old to havem but not bone quality or as she terms it, elasticity or resilience.

Another point, she says you can die from it but those stats are based on the fact that if you get the fractures eg break a hip when very old and frail it is bad news but it's not the actual fracture that kills you, more the lack of mobility afterwards. So no need to panic and think you are going to die if you break a hip

[PMRpro Ambassador in reply to tangocharlie]

A very common problem with a broken hip or other major bone is the immobility - you struggle to breathe deeply, develop lung problems, pneumonia and the "old man's friend" carries you off.

[ladygigger]

A very interesting read: my mother had an early menopause (early 30's, after having her second child at the age of 32 she never had a proper period again). I was diagnosed with osteopaenia after my first DEXA scan in my mid-40s, having gone into perimenopause around the age of 38. My mother's version was as advanced as the lady in the article: yes, a sneeze could break a rib, as could stretching over to the far side of the bed when making it.

I don't know why the medical profession are so reticent at sending people for a DEXA: I had to fight for my first one because I knew what problems it was causing my mother in her 70's. Anyway, after osteopaenia was diagnosed I was put onto Adcal D3 and have been on it ever since.

In 2008 I had a major fall - missed the top step coming out of the loft on to a step ladder and fell to the floor, landing on my bottom. It then took one and three quarter years of visits to the doctor (you're getting older, falling is going to hurt more, come back if it doesn't improve). I was advised to go and see a chiropractor - who also missed a spinal injury whilst she was whizzing my vertebrae around, saying that they were out of alignment.

When I finally did get an x-ray, it showed that there were 2 crushed vertebrae, so off to the physio I went. A DEXA showed no further deterioration at that time.

Since having PMR, I've been prescribed alendronic acid but then told not to take it until ongoing dental work (mostly extractions) had finished. I'm now 2 years into my PMR journey and still haven't taken it because my dentist is threatening another 2 extractions.

This is another condition where, because it's mostly suffered by women (or that's my opinion, anyway) there is insufficient research and new treatments available. I've been trying to get a new DEXA, but my rheumatologist said that they'd probably wait until I got to zero pred. Since I'm stuck at 6mg at the moment, that could be a long time!

[tangocharlie]

Why wait for zero Pred, I don't see that logic if supposedly steroids make bones worse? But then in my experience DEXAs on their own don't really tell you much and mine said my bones were fine but they weren't. We had the same problem of undiagnosed fractures and the ROS nurses told me it is far too common, they estimate about a third of spinal fractues go undetected, which is scandalous. They (ROS) are trying to address this problems which as you say mainly affect women, could that be a coincidence?