There has been quite a lot of dicussion about this recently and I thought I would give you this link to read the background.
But this quote certainly gives a lot of basis to their assumptions we need AA even without a dexascan. And however you look at it, having PMR does impair our agility and makes us prone to falling:
"Using the WHO definition of osteoporosis, the prevalence in the US of osteoporosis in Caucasian postmenopausal women based on the lowest bone mass at any site is estimated to be 14% of women aged 50-59 years, 22% of women aged 60-69 years, 39% women aged 70-79 years, and 70% women aged 80 years or greater"
Thanks for this , you know I love "the science" but being in the first age group , I know it's a decision that might need to be considered and checked on earlier for me because of the health issues I have and the types of medication I've needed to use over the years.
Interesting. Pleased to see the emphasis on lifestyle, nutrition and need for supplements, although regrettable that Vitamin K2 (menaquinone) apparently not mentioned. There is growing evidence that K2-MK7 has a beneficial effect on maintaining and improving bone density, and many dentists are convinced of its beneficial effect on dental health.
Having had a recent encounter with an osteoporosis nurse I'm more convinced than ever that we all need more education about maintaining our bones throughout life. She said there is no evidence that Vitamin K2 helps bones, but this is not true. There is evidence, just that Western research seems to be strangely reluctant to conduct proper studies. The Japanese have known about its benefits for a long time, as have dentists who see how it improves dental health. So add Vitamin K2-MK7 to your supplement regimen, along with the recommended Vitamin D!
Thanks…related,but not quite the topic I’m going to ask for a Dexa scan this week, I’ve never had one! Interesting to see what the reply us from my Dr. S x
I had a DEXA scan a few months ago, I have oestoporosis and am 48 yrs old. My doctor prescribed AA for me along with calcium and Vit D tablets. I decided not to take the AA. Too many cons for my liking.
What do you mean by cons? If you have osteoporosis at 48 you do have a bleak expectation in a few years when it comes to fractures, especially spinal compression fractures.
You're correct, but mainly I was very concerned about the side effects and really also, if it was worth it. I know a lady who is in her mid 70's who was diagnosed with oestoporosis at the same time, this lady was a palative nurse for many years. She too was very concerned and was debating to take it.
Really osteoporosis is the least of my worries, having bursitis, hip, and knee oestoarthritis is the main causes of my pains. Plus the fibromyalgia the doctor is adamant that I have!
Being diagnosed in your 70s is a very different matter than being diagnosed in your 40s. There are side effects - they vary and some people have none, DorsetLady took AA for some years with no problems. I did not take anything as my bone density over years remained OK but in the last year or so I developed a compression fracture in my spine and I had always said if there was evidence I needed something more than calcium and vit D I would take it so had a zolendronate infusion.
Spinal fractures can be excruciatingly painful and disabling, luckily mine wasn't, but my husband lost a lot of his mobility for the last 18 months of his life as the result of his - it happened just before the start of Covid and he was unable to have rehab which made things worse of course. But should you have multiple painful fractures it can result in months of pain and diasability.
I would recmment you contact the Royal Osteoporosis Society helpline to have a thorough discussion with an expert.
Thanks, I know there are real risks with not taking a biosulphanate as I age more. It's just, currently, anyway, that the side effects, the not knowing if it'll work anyway are too risky and unknown. I've read many people's experiences about it and mostly they were negative.
Bear in mind though that more often than not it is the people with a poor experience who post to complain. Those who didn't have a problem don't bother.
Good point. Many many years ago I had a temp job working on the Customer Helpline for a parcel delivery co. Because we got complaints all day every day it seemed that every parcel got lost or stolen in the post when in reality it was a tiny percentage of the millions sent every day.
Not going to weigh in on the decision to take an OP med, your relatively young age is a concern, but whether or not you take a medication there are a number of things you can do to encourage improved bone health. Have a look at my story for some ideas, and also a link to possible secondary causes of osteoporosis which should all be checked for before OP medications are prescribed. 🍀
Read the link. Regarding falls and likelihood as we get older I fell over my dog 3 months ago, no damage ( except ego) but wary now, so, I have brought myself a Sholley, ( like a square box on wheels you push). Great for shopping, no more being unsteady with heavy bags. Given me a lot of confidence!
Thanks for this. I'm very interested in this topic as have just been diagnosed, to my total surprise, with 'squished vertebrae' ie stress fractures in my lower back now compressed into a wedge shape. This despite DEXA scans just over a year ago showing everything was fine and an x-ray last year showing my spine was good esp for 'someone of my age'. I'm only 63!
It's being assumed that the damage is due to long term steroids but it seems from my preliminary research watching videos on Youtube from the Osteoporosis Society that women past the menopause are more vulnerable, you can break a bone just turning over in bed.
So one of my questions is what is the point of DEXA scans if they give false reassurance? Obv the next question is what can I do about it. Dr M is sending me for a Zolendronic acid infusion which I'm told will help strengthen bones to help avoid future damage but I haven't done any research on that yet. I think I will probably need some surgery too but not been referred anywhere yet as am waiting to discuss this at my next rheumatology appointment.
I think I have osteopenia rather than full blown osteoporosis but that's another question I'm trying to find the answer to, how is that diagnosed?
Thank goodness Dr M did x-rays and scans as I have been fobbed off by my GP and NHS physios for over a year telling me my back pains were just muscular and I had to do the exercises they prescribed and take painkillers. I kept saying they were wrong as I was in excruciating pain and wanted scans but kept being told there was no need. I'm pretty angry and depressed TBH but trying to tell myself 'sh*t happens' and 'we are where we are'.
This link has been posted before but am posting again for people new to this topic
Osteopenia isn’t diagnosed as such… its just a term based in the results of your DEXA scan [usually referred to as mildly reduced BMD]and the WHO references-
Your results
A bone density scan compares your bone density with the bone density expected for a young healthy adult or a healthy adult of your own age, gender and ethnicity.
The difference is calculated as a standard deviation (SD) score. This measures the difference between your bone density and the expected value.
The difference between your measurement and that of a young healthy adult is known as a T score,
The difference between your measurement and that of someone of the same age is known as a Z score.
The World Health Organization classifies T scores as follows:
above -1 SD is normal
between -1 and -2.5 SD is defined as mildly reduced bone mineral density (BMD) compared with peak bone mass (PBM)
at or below -2.5 SD is defined as osteoporosis
If your Z score is below -2, your bone density is lower than it should be for someone of your age. Z scores are usually used for children and people under 30 who are still growing.
This is a post I raised some time ago on subjects- you may or may not have seen it before -
What's the point? It won't change anything. My score was still fine. You may wait ages, and what will it tell you? Just get on with it and see about the infusion.
I agree with both of you. But I'm still puzzled why we have DEXA scans at all if as in my case it gave false reassurance? I suppose for those who have already got osteoporosis without their knowing it would get them on to treatment earlier. I thought I was getting enough calcium in my diet and plenty of load-bearing exercise so this is all a bit of a shock adn out of the blue. Maybe I was wrong to give up the Adcal tablets (I reacted badly to them and anything with calcium carbonate in) and maybe I should have taken AA, who knows. I probably should have been on HRT but when I was going through the menopause around the age of 48-50 dctors were taking women off it due to cancer scares. I wonder if there is a connection with menopause and early-onset PMR as that also happened at 50?
There are exceptions. It's like asking why we have a speedo on a car when it can go wrong. It's the best that is available and it isn't perfect. Same with diet. But amongst the saddest phrases in the English language is "what if". You can't go back, you can't change what is or isn't done, you are where you are and have to start here, the start of the rest of your life.
Menopause - no idea, I was on HRT, stopped it at 50 (big mistake) and PMR appeared a few months later, But I wasn't through the menopause at that stage - had periods for another several years.
Like so many things think its down to individuals..
I had hysterectomy aged 37 (one ovary left) -so did still have menopause early 50s no HRT offered. That plus GCA doses is why I took AA and Adcal (no DEXA scan offered, and not sure I was in the right state of mind to insist on one -too busy with sight issues).
Took AA for 4 years eight no issues and did have DEXA scan a couple of years later after GCA remission - all readings in normal range.
Whether I did actually need AA or not I’ll never know. Report from DEXA did suggested I stay on Adcal (due to history) -so I have.
Same here - x-ray before Christmas showed a ?compression fracture somewhere lumbar, can't remember exactly. I don't think that the back pain was due to the ?fracture, it is in a different place, but I do suspect the change in shape of the vertebra was stressing muscles. Christian does x-rays every time I have new back pain so it won't have been there at the time the pain started and I haven't read the dexascan done at the same sort of time - density measurements are fine still but it is a question of the QUALITY of the bone and I don't know there is any easy way of assessing that on the NHS - it can be done
No point at all being angry or depressed - easy for me to say of course - but things will improve. Christian did a steroid injection into the SI joint - tremendous improvement in pain and it continues to improve. I had my first zolendronic acid infusion - it very kindly triggered atrial tachycardia after my atrial fibrillation had been sorted with the ablation!! Hum!! It is said to stabilise the bone within a few weeks - far faster than oral bisphosphonates. I have no idea if that has helped the pain, it may have done so. But get on, see your dentist, have a panoramic x-ray to make sure there's nothing hatching and get the infusion. And deal with what may turn up.
What it does all do is make any decision about returning to the UK even harder - the things that are still accessible to me here are a major factor in retaining the flat so I keep medical care here.
The weather has been horrendous - probably not helping.
Thank you, will take all that in when doing my research today. So sorry to hear you're suffering too. Honestly, when I was young I was cyncial about people being off work with 'bad backs' but now I know how excruciating and debilitating it can be I have so much sympathy for anyone I see hobbling or on a rollator like me. As well as the x-ray I had a CT scan which shows nothing sinister. Apparently the sacrum etc is intact, the squished bones are L1, L2, L3 and T11 and T12, the latter whcih seems to be recent. I had to look up 'focal kyphosis at the thoracolumbar junction' and it means as Dr M said on the phone 'vertebrae squished to a wedge shape'. The report also says 'normal appeareance of the sacroilliac joints with no inflammatory or structural changes' so I can't see them giving me an injection to that area. Pelvis is fine too which is a relief.
Re coming home, can you flit between Italy and the UK now that the GHIC card entitles you to treatment wherever? Get every assistance availalbe when travelling. The NHS is in such a mess here which is why I've sruggled to get help, still long waiting lists for referrals and very difficult to see a GP
I did tell you all this last time you talked about your back problems! And I do find even here, the most likely place for me to get practical help is the rhemy department - and in your case, enlisting Sarah on your side was key.
More use is staying resident here probably and use my holiday insurance to bring me home to South Tirol in an emergency!! I upped it to the top level in case I might want to be repatriated quickly!! Used to be the weather that kept us here - the first 5 months of 2024 have been the wettest on record!!
You did and your advice is/was very useful. I'm just repeating bits for those who haven't seen my earlier posts and your replies there. Thank goodness for SM or I'd still be in a right pickle. I felt guilty asking her to intervene as it's not strictly to do with PMR but as she said, it is sort of connected as the problem is probably due to long-term steroids, at least in part. Or it may not, might be just one of those things.
Your plan seems a good one, are you still planning to come over here in your camper van this summer?
It is part of the clinical picture and almost certainly at least partly a long term pred problem so yes, part of their remit.
I'll be over to sort out my future Oma-pad in Scotland, Just sold the flat the daughter is living in at present, she will be moving to the new house and we can start spending money so need builders and the like!!
I went away for the best 4 days weatherwise this year about 2 weeks ago - it has rained every day since!!!
I read a little snippet in a newspaper 'health tips' article written by a GP recently which I thought was useful. It said if you are offered a new pill or treatment weigh up the pros and cons before deciding using the mnemonic BRAN -
I've just done an armchair yoga session and ne of the participants came out with a great phrase about keeping moving - 'motion is the lotion!' not heard that before but will adopt it as a mantra
Somebody on the forum recently said their physio used it. And I heard a GP saying its about little and often - getting up from the computer and walking around for a few minutes every hour, not necessarily about an hour of organised exercise.
That's what Sarah said to me too - little and often. I'm trying to get up off the chair and move around adn stretch at least every 20 mins and also get outside for mini walks even if it's only 5-10 mins. I still haven't had time to read the report the charity commissioned on exercise and PMR, just been so busy the last few months. My gripe though is that the physios just kept telling me to do the exercises which I kept saying were too much, when all along I had broken bones. I wish I'd paid privately for x-rays a year ago. Shouldha woulda couldha eh, hindsight is a wonderful thing?
Next time don't wait, email Sarah. She doesn't do the x-ray and she has superb physios who would have assessed you I would hope. To be fair here you HAVE to go via a doctor to get any hospital physio and anyone in severe pain would be sent for an x-ray if the physical exam showed a need.
It was MSK physios at her hospital who first assessed me, I had a referrral from my GP but I think she possibly tried to accelerate it. And to be fair, she commissioned an x-ray in Jan 23 and everything was fine so nobody thought I'd get fractures just months later. I remember the physio saying 'well you had an x-ray in Jan and everything was fine', and that was in June and Sept. When I went back to my GP in Sept saying MSK and the exercises had been useless I said I thought I needed scans of some kind and the GP agreed but the next MSK spinal specialist physio I saw who was about 12 was adamant I didn't need them and to do exercises for bursitis. I also worked out by my own research that my back had by summer gone into spasm to protect itself from further harm but neither GP nor physios helped with that and it took months to get some Diazepam. I only knew about that becasue a friend who is a GP said that's what she prescribes for back spasms. Oh sorry this is turning out to be a rant. I feel I need to put in an official complaint but have no idea how to go about it. I was let down by so many people and in so much agony I had to sleep upright in a rocking chair for months as I couldn't lie down. I'm seeing Dr M in a few weeks so hope to be able to pick her brains. Of course now I'm being strongly advised to cut steroids but I'm struggling to get below 10, even going very slowly. It's hard to 'go by symptoms' when I ache all over and am struggling with fatigue. i'm not sure whether going from 10 to 9 would even be helpful at this stage. I'm rabbiting ... thinking out loud .... will update in mid-June
That's what the physios kept saying, and I'd generally agree, it makes sense. But in this particular case maybe was wrong advice, you don't walk on a broken leg do you?
I'm sure it happens especially as fractures often go undetected as in my case. Elderly people often get hairline fractures from falls but they don't get x-rays. I'm going through the videos on the ROS website and the physios seem to say be very careful innitially as you don't want to risk another fracture. Ideally rest for 2 weeks. In my case when I first got pain I tried to walk it off as that is what I thought would help but things got worse and worse
I'm just actually reading the article you posted and it is sad what it says about the people in care homes. I doubt they get much exercise, although when my step mum was in one (with dementia) they did try and do some exercise to music with the residents, but most of the time they just sat in chairs watching telly.
The videos on the Osteoporosis Youtube are also very useful. Thanks to you, DL HeronNS for all the research
Not sure I like the term 'older seniors' they use in the article but I guess it sounds better than geriatric. There does seem to be a case for offering infusions to people, particularly women deemed likely at risk of osteoporosis, catch it before something bad happens
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Please does anyone know a private Rheumatologist in Cornwall or Devon who I would be able to go and discuss my osteoporosis with? Thank you.
Why me? Not an exercise in self pity, but an objective analysis of how I think GCA got me. 
Do any tests differentiate PMR from osteoporosis?
I forgot to take pred yesterday - how much should I take now?
