MNHQ here: Got questions about osteoporosis? AMA with Royal Osteoporosis Society specialist nurses Kirsty Carne and Julia Thomson, Thurs 26th Feb @ 7pm

[RhiannonEMumsnet]

Hi there,

We’re delighted to announce an AMA with Royal Osteoporosis Society specialist nurses Kirsty Carne and Julia Thomson on Thursday between 7 and 9pm.

Kirsty and Julia have worked as specialist nurses for the Royal Osteoporosis Society for over 20 years, both managing the Specialist Nurse Helpline Service and providing support and information on osteoporosis and bone health to enquirers. They can provide up-to-date information based on the latest medical research to help you feel more informed, but they cannot give you direct advice. Information given by them is not intended to replace the advice that your own doctor can provide.

The Royal Osteoporosis is the UK's largest national charity dedicated to bone health and beating osteoporosis which affects over 3.5 million people in the UK. By working with healthcare professionals they are driving research and developments of new treatments while supporting those living with osteoporosis, often known as the 'Silent Condition'.

Please post your questions for Kirsty and Julia below, and join them on the thread on Thursday evening to hear the answers.

As always, please remember our guidelines - one question per user, follow-ups only if there’s time and most questions have been answered, and please keep it civil.

Thanks,
MNHQ

I get tested (scan) for bone density because of my medication - oral steroids.
At my last scan the report said I had osteopenia - what does this mean and what should I be doing?

Well timed as I was diagnosed with severe Osteopenia last week! I’m 39, have rheumatoid arthritis and frequent steroid use and have been on Depo provera for 5 years. My rheumatologist is concerned that I can only get a ten year window on meds and I’m pre menopausal so ideally I wait. What can I do in the meantime? My Mum has RA and osteoporosis inc fragility fracture at 62.

I have regular dexa scans because of family history of osteoporosis, but my siblings have been refused this. Should I continue to have the regular scans?

Hello everyone, Julia and I are specialist nurses from the Royal Osteoporosis Society helpline. Thanks for the invitation today, and thanks for all your questions. We will answer as many questions as we can over the next two hours.

Hello from me too

Hi, I was found 2 years ago to have an unexplained old fracture in my upper spine, had a dexa scan and things were ok, borderline osteopenia in a couple of vertebrae (not close to the fracture. Am due another one but now 44 and experiencing some peri symptoms, nothing major yet but I’m wondering if I should err on the side of getting HRT sooner than later to protect my spine?

Hi @ChocolateLemsip Calcium is an important part of making new bone, and keeping bones healthy and strong. Dairy isn't the only option though, so don't worry. We have plenty of info on our website about other alternatives that are just as useful that you might be able to include on this link https://theros.org.uk/information-and-support/bone-health/nutrition-for-bones/calcium/. You can also use a supplement to top up your levels if you are struggling to get what you need from your diet. There are also other ways to look after your bones as well which you can read about here https://theros.org.uk/information-and-support/bone-health/bone-health-checklist/ .You may also like to check out or risk checker which you can find at the bottom of that page.

@Commonsenseisnotsocommon You're quite right, family history is a significant risk factor for osteoporosis, especially following the female line so its sensible to start thinking about your bone health. Breastfeeding causes a temporary drop in bone density, but bone density usually recovers after breastfeeding stops so isn't a problem long term and obviously provides great benefits for the baby. You can make sure you are getting adequate calcium for your bones and regular exercise to ensure you are doing all you can for your skeleton. We have lots of info on our website here https://theros.org.uk/information-and-support/bone-health/

Hi @mzdemeanour I am sorry to hear about your recent diagnosis. Any kind of medicine that lowers your levels of oestrogen, like aromatase inhibitors can cause further bone loss. We have more information on this link here https://theros.org.uk/information-and-support/osteoporosis/causes/breast-cancer-treatments/ Usually bone health is carefully monitored if you are using medicines like this, and if needs be, a non-hormonal medicine to protect your bones would be offered too to prevent bone loss happening. You would need to talk to your doctor about the risk versus benefit of possibly continuing with HRT though, as this will depend on your individual circumstances. Best wishes.

Hi @CornishPorsche Your poor mum! Atypical fracture is very rare thankfully but not nice when it happens! We have a factsheet on it here https://theros.org.uk/information-and-support/osteoporosis/treatment/health-risks/atypical-thigh-bones-fractures/ which you may find useful. We also have lots of information on all the treatments available for osteoporosis herehttps://theros.org.uk/information-and-support/osteoporosis/treatment/. You will also see some useful videos exploring all the treatment options. As she has had multiple fractures it is particularly important to find a treatment that suits her to reduce the risk of more

I'm 65 and have quite severe osteoporosis.

In 2015 broke a metatarsal (hard fall)
In 2016 severe L1 wedge (hard fall)
In 2021 severe fractured wrist (pinned and plated), severe T12 wedge ( hard fall)

2016 annual zolendronate for 3 years, then maintenance every 18 mos then the 2021 fall.

2022 - 2024 Teriparatide (self funded because just under the bar).

Back on annual zolendronate since July 2024, last of three coming up.

Recovered anorexic in 20s and late diagnosis for graves disease aged 30. Grannie had a Dowager's hump.

On the plus side I am fit, still work 28 hours pw, and have no back pain although I nurture my back and do pilates daily.

When on zolendrate I struggle with my weight and gain about 5lb per cycle (I got it off when off the zolendronate for a year). BMI presently 27.

Views on zolendronate and weight gain and are there developments re the next line of treatment as I know I can't have more Teriparatide.

I have a superb rheumatologist at a London teaching hospital but the services around her are shockingly inefficient

Hi @MabelMarple Thanks for your comments about our helpline, I am glad it was helpful! The general recommendations are that all adults need a minimum of 700 mg per day of calcium. If you are struggling to get all of that from food, then supplements are useful to top up to make sure you are getting enough. Calcium supplements won't do the same job as medicines lie zoledronic acid, so they can't strengthen bones and reduce your risk of breaking bones, but they will help to ensure you have everything your bones need for good health function. Don't forget your supplement may also have vitamin D in which helps your body absorb the calcium, so again really important for normal bone function. You may need to think about replacing that with another vit D supplement if you can't take the Adcal, or do get your calcium from food. We have more info on calcium on this link https://theros.org.uk/information-and-support/bone-health/nutrition-for-bones/calcium/

@SandwichMakerHater Teenage years are very important for building bone. Teenage boys especially need higher calcium intakes because adolescence is a critical bone‑building period. Dairy is not necessarily essential non‑dairy calcium‑rich foods, including fortified plant milks, calcium‑set tofu, leafy greens , tinned fish with bones, and fortified breads and cereals can all contribute to a well balanced calcium rich diet. The other vital thing at his age is remaining active. Immobility is not good for bones so it is important that he gets outside to get the all important vitamin D and that he keeps as active as possible. These will all stand him in good stead for the future. Theres lots of useful info here theros.org.uk/information-and-support/bone-health/bone-health-checklist/

Hi @Lovingthelighterevenings Yes! It is never too late to make changes that can help your bone health. Bones keep changing throughout life, and making changes now will still really help. Have a look at our website for more info on nutrition for bone health here https://theros.org.uk/information-and-support/bone-health/nutrition-for-bones/

Hi @Asnuggle You can read all about osteopenia and what it means here https://theros.org.uk/information-and-support/osteopenia/ You will see its not a condition as such but rather the name given to bone that is less dense than average but not low enough to be called osteoporosis. We are said to have osteopenia when a T score is between -1 and -2.5 so you will see that your scores all sit within this range. For more info on what your scores mean click here https://theros.org.uk/information-and-support/osteoporosis/scans-tests-and-results/bone-density-scan-dxa/

Hi @HalfasleepChrisintheMorning I'm sorry to hear that, I hope your mum is recovered now. There are a number of other options, depending on the reaction she had, she may even be able to try another tablet. The GP can talk through some options with her, but it may be that they need to refer your mum to the specialist at the hospital who can give a wider range of osteoporosis medicines. I will be honest and say most of those are injectable medicines, but this could be as little as once a year. HRT does help bone health, to a similar level as some of the tablet medicines, but the suitability of HRT would need to be assessed for each person as that does come with some small health risks too. For more info about medicine options, including HRT see our website here https://theros.org.uk/information-and-support/osteoporosis/treatment/

Hi @Oblahdeeoblahdoe A family history of osteoporosis, especially if either of your parents broke a hip, is considered a risk factor for you. It is good to hear you keep active, and a family history doesn't automatically mean you will have a problem, but it is sensible to talk to your GP about this and then can use on online risk assessment questionnaire to see if you should have a bone density scan. You can also check your own risk level with our risk checker here https://theros.org.uk/risk-checker/?campaign=77a866ee-c708-ed11-82e5-0022481b5a28 which just takes a few minutes and will email you a result which you can then take to your GP to talk about.

Hi @Tryonemoretime I'm sorry to hear the drug treatments didn't work for your mum, although coeliac disease is a risk factor for osteoporosis, it generally doesn't impact on the effectiveness of treatment. https://strwebstgmedia.blob.core.windows.net/media/5delxgz0/coeliac-disease-and-osteoporosis-fact-sheet-september-2017.pdf There isnt anything in the 'non-drug' field that has been proven to reduse the risk of broken bones like the prescribed drugs but there may be treatments that you havnt considered. Click here https://theros.org.uk/information-and-support/osteoporosis/treatment/ for info on all the options available.

My dad is 70 and has horrendous osteoperosis. Sadly I think he is past the point of help (he’s had a drip a few times and surgery on his spine and hips) but he has such a bad Hunch he is practically doubled over and his chest/ back is mishapen. I’m so sad for him. No one can tell us what caused it and both his parents died before 60, so no idea of family history. Could it be caused by trauma from a car crash, or broken bone through his life (lots of sport/cycling)? Is there anything I need to do to protect myself?

Hi @AwayADay An early menopause (before 45) is a risk factor for possibly developing osteoporosis, but it is not inevitable as many other things affect your bone health too. It may be sensible to have a look at our risk checker https://theros.org.uk/risk-checker/?campaign=77a866ee-c708-ed11-82e5-0022481b5a28 to see if there is anything else you may need to think about too that will affect your risk and then talk to your GP. Checking that you are doing all the healthy things for your bones is also a good idea, you can read more about those here https://theros.org.uk/information-and-support/bone-health/bone-health-checklist/

Hi @PinkCatCushion You will find the info you after on the age of scanning for people with coeliac disease here https://strwebstgmedia.blob.core.windows.net/media/5delxgz0/coeliac-disease-and-osteoporosis-fact-sheet-september-2017.pdf. You will see that it is most useful after the menopause so if your doctor has not mentioned it when you reach this age, it is worth bringing it up. There is no need to take more calcium because you are coeliac but vitamin D assessment and supplements are sometimes required. This is all discussed via the link above

Hi @Crystaltipsandalastair Thanks for the very kind words about the helpline. Its so nice to get feedback like this! In the UK you will normally have a scan every two to five years. The reason for this is bone density changes very slowly over time. If you have scans too close together you will not see any change. Please click here https://theros.org.uk/information-and-support/osteoporosis/scans-tests-and-results/bone-density-scan-dxa/ for more information about this

Hi @insomniac1 We all lose bone density from our mid to late thirties onwards. Weather this causes osteoporosis later on will depend on lots of factors. Significant weight loss, through which ever means (injections, dieting, illness etc.) will all cause some bone density loss too due to the dramatic changes in the body affecting the bone cells and how they change. It is unclear whether medicines like Mounjaro cause bone density loss themselves, as bone loss will occur anyway due to weight loss, especially if that is large amounts in a short time. This can affect all ethnicities.

Hi @BruachAbhann This really depends on your level of fitness and what exercise or activity you are used to doing. If you are starting out and haven't been doing much before then it is sensible to start gently and work up gradually. It is really only if you have had broken bones (fractures) in your spine that there would be a real need to avoid specific movements, such as bending, but if going careful makes you feel a bit more reassured then that's fine. If you were doing Pilates and weight lifting before and are used to doing them and want to continue that may be fine. If you want to start, we have lots of info and videos on our website here https://theros.org.uk/information-and-support/osteoporosis/living-with-osteoporosis/exercise-and-physical-activity-for-osteoporosis/ Note - each section on that page has more information when you click in it. For example, in the 'caring for your back' section there is a page and video about Pilates with osteoporosis.

Hi @Smidge001 Bone density scans are offered on the NHS if you have risk factors for osteoporosis. This is because they are most accurate in predicting the risk of fracture in the presence of other risk factors. They are generally recommended if you are post menopausal when the results will help with a decision regarding the need for treatment. You will find more info on this here https://theros.org.uk/information-and-support/osteoporosis/scans-tests-and-results/bone-density-scan-dxa/ Scans can be obtained p[rivately but if you wish to use scanning to assess change (as you do) serial scans will need to be done on the same machine for accurate comparisons to be made