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

Thanks for doing this. I have been worried about osteoporosis (though not knowing much about it) as I became unable to eat dairy around 25 years ago, though in rebet years do get some calcium from other sources. How important is calcium for prevention and are there other ways to protect from the disease? Thank you.

Thanks for this opportunity. Both grandmother and mother have had osteoporosis and I'm worried about it. I've been breastfeeding for 2.5years and concerned about increased risk due to that. Is it a valid concern and what can I do to prevent it in myself? Thanks

How interesting, thank you!

My DM is in her 70s, osteoporosis, wide familial history of it including in children and both men and women.

She had a poor response to alendronic acid leading to an atypical fracture of the femur in her 50s. She no longer has any treatment of any kind for her bones. She is very low mobility due to multiple fractures, hip replacement, knee replacement and scoliosis....

(I had a dexa scan aged 40 - normal for my age apparently thank goodness!).

Are there any new treatments or therapies she could explore?

Hi, I was recently diagnosed with oestrogen+ DCIS (stage 0 breast cancer). I will be having a lumpectomy followed by radiation and have already been urged to come off HRT which I have been on for many years following early menopause. My mother was in the same situation, came off HRT (with horrendous menopausal symptoms), took Tamoxifen for five years and has gone from osteopenia to full-blown osteoporosis in her lumbar spine. What are the ROS’s view on tamoxifen/aromotase inhibitors and the risk of osteoporosis and whether the benefits of HRT post-breast cancer in preventing osteoporosis and other issues can outweigh the risks of recurrence of breast cancer?

I've used the helpline a couple of times and it's excellent. Much better than similar ones for rheumatoid arthritis.

Massive family history of osteoporosis and after being put on steroids six years ago I had to fight for a dexa scan which eventually showed osteoporosis.
I've done three years on alendronic acid which wrecked my stomach and two years on zolendronic acid. I'm due another dose in October but planning to decline due to the horrible side effects I had with the second dose. First dose was fine. I also may need dental work doing which is a factor.

The good news is that there was an improvement in bone density after three years.

On the advice of the ROS helpline I've increased my protein intake quite a bit.
My question is about calcium. I've looked into increasing my calcium by diet but it's surprisingly hard.They are always stressing how important it is to take the supplement . I would like to know what the evidence is that taking adcal actually helps prevent bone loss.

My son is allergic to dairy. He's a young teen.

He takes a calcium, magnesium and Vit D supplement every day and I try to use fortified products or any with calcium naturally.

What else should he do during his teen years to give his bones the best chance while he is still growing, to try and embed good habits for adulthood?

Any hope for improving my diet for bone health if in my mind 50s?

My scores are attached
I am 45 and underweight with a maternal history of osteoporosis

how severe is my osteopenia?

My 78 year old mum had a fragility feature and has osteopenia on Dexa. She started on alendronic acid but after one tablet had a severe adverse reaction and can’t take them. What other options are available? We’re waiting for a GP appointment to discuss options. She’s nervous about Denosumab because she really struggles with blood tests (difficult stick). Would HRT be an option?

I have coeliac disease and also osteoporosis. (Dexa 2018 lumbar -3.8
Right total hip -1.3
Left total hip -1.7)
In the past, I have taken Alendronic Acid and also Strontium Ranelate. The drugs didn't work for my coeliac mother (her consultant said her spine was 'shot to pieces') and I no longer take them. My questions are, do the drugs not work for coeliacs? And what non drug treatments are being trialled?
Thank you.

Can you request a dexa scan if there is a family history of osteoporosis? I'm 69, slightly built but keep myself active.

Natural menopause at age 40 . No HRT .
Now am I nearly 60 , is osteoporosis inevitable ? I've never broken a bone yet in my life .

What age should osteoporosis screening start for Coeliacs?
Does screening for osteoporosis happen automatically for someone with Coeliac disease or does the sufferer have to contact the GP or consultant to ask?
Many Coeliacs are lactose intolerant, how much calcium should someone with CD consume each day? Should they be taking calcium supplements? What about Vitamin D supplements?

I have recently been diagnosed with osteopenia and am only 43 years old. Family history of osteoporosis. I also started mounjaro a year ago. Do you think the mounjaro has made it worse? What supplements should I take other than vitamin D. Any other tips? Is it true that it’s common for Asian women to have osteopenia in their 40’s?

The ROS helpline is fantastic- I have had some great advice.

What is the recommended time lapse for dexa scans? I am a member of some international osteoporosis groups on Facebook and members in other countries eg USA seem to get dexa scans more frequently eg 1 or 2 years.

Can I get a Dexa scan on the NHS? I'm almost 50, and feel it is important to understand what level i am at now, to try to address any issues as soon as possible. Also to give a comparison point for the future.

If it isn't possible on the NHS,.is this something that can be paid for privately? I feel regular scans would be extremely helpful for preventative purposes.

What type of exercise is safe if you have osteoporosis in the spine? I have osteoporosis in my spine (-3.2) and I was told not to bend at the spine so it makes me nervous about doing exercises. Is pilates ok? If weightlifting, is there particular exercises I should do or avoid?
Thanks!

My Lumbar dexa reading was -3.8. It scared me silly at first, but have had no problems. My pilates teacher wasn't keen on my going to her classes because of all the exercises including curving over, so no longer do that, but I'm living as normal a life as possible, giving that Long Covid has impacted my ability to go for long walks. My life is in God's hands, but I try to be sensible about what I do, whilst not stressing about it!

Does HRT really protect against osteoporosis? I take 1mg Sandrena daily, 1 x pump Testosterone 2 times a week, vagifem x twice a week and have Mirena. Frequent bun fights with GP I try to refuse testing as it changes daily anyway but they constantly block repeat scripts. Have broken wrist and fractured neck in RTA in the past and keen to protect self going forwards, psoriasis arthritis in spine, fingers and knees. Thanks

Thanks for running this. Have name changed because this is quite personal.

I have a family history of osteoporosis on both sides of my family. I am 50 and on HRT. I had a hip replacement at a young age and was advised by the orthopaedic team that to look after the joint, I should not run, jump or do anything that would put a greater impact through the hips. I do walking workouts at home with dumbells several times a week. I have a job where I spend hours on my feet each day. My weight is in the normal range of BMI, and I have been vegetarian for decades. I take a daily vitamin D, drink milk, eat yoghurt and cheese daily.

Concern over osteoporosis was one of the reasons I started HRT. My GP has suggested that I take up running to increase bone density, but I am worried this would put too much pressure on my hip replacement as it is contrary to what the specialist team advised. Having been told that hip replacements can only be done 2 or 3 times in a lifetime and having had years of pain before the hip relpacement, I do not wish to do anything that would jeopardise the integrity of it. Is walking and some weights sufficient to maintain bone health?

Diagnosed 6 months ago after having multiple courses of prednisolone for severe asthma. At age 71, is HRT a consideration? Thank you.

My DD has suffered with anorexia and has osteopenia, she is 17. Is this reversible do you think with the correct nutrition? Due to have another DEXA scan next week.

Hi, I’m dairy intolerant and I’ve had a complete hysterectomy. Is there anything I can do to protect my bones? My sister insists that I’m more at risk because I’m overweight but I’ve heard that this is actually a protective thing, provided you’re not obese. Is this true?

I’ve been diagnosed with severe osteoarthritis in my spine at - 3,4. I’ve just started medication for it: 6-monthly injections of Prolia (denosumab). Is it still possible to improve my spine density at that score? Have you seen real-life improvements at that score? And if so, what’s the best I can hope for? Can one improve a whole “point” ? Thank you for answering our questions!

What are the benefits of taking HRT alongside alendronic acid, over one or the other, after menopause. My bone density was -2.7 in my hip and -2.3 in my spine nearly 3 years ago and I’ve been taking both since. Is this a good approach? Will I build up bone density again? What else should I be doing to help?