66 yr old female, 150cm height. Osteoporosis in spine with bone density 0.750g/cm2, T score -2.7, Z score -0.9 from DEXA scan. Taking Vit d3 and Calcium.
Saw GP in Jan, told if I had past fractures I should go on Alenronic Acid, and sort of agreed, not thinking I had any. Xrays in Feb showed I had some I didn't know about as they were put down to musculo-skeletal at the time.
I would prefer not to go on bisphosphonates after looking at the NICE Patient decision aid on Bisphosphonates for treating osteoporosis diagrams and also not wanting to risk side effects.
Has anyone been in my situation with similar T score and used natural methods like excercise and diet? Were they successful in retaining bone density?
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Greenllama
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As one who has had catastrophic spinal fractures (which btw like yours were also missed and put down to 'back pain' - and there are far too many of us who suffer that fate) I would say the risk of not taking any bisphosphonates and getting more fractures especially once you've already had some far outweighs the risk of any side effects. There are so many different options available. Have a read of everything on the ROS website, maybe talk to the nurses on the Helpline then go have a conversation with your GP. I opted for Romo (Romosozumab) and am looking at the possibility of HRT as a follow up after the 1 year on Romo or maybe annual Zoledronic infusions, I'm still undecided. Yes you may be lucky and be OK on just diet and exercise but you may not be so lucky next time, 1 in 2 women suffer fractures and they aint great odds. My spine is now permanently crushed and bent and I'll never walk properly again. My DEXA scores were always fine so I thought I didn't need to worry. How wrong I was. Sorry to be the merchant of doom and gloom but in my case the Romo is a no-brainer
Thank you. I will check out alternative meds. I wasn't offered Romo, just Alendronic Acid, that is what the surgery offers first. Were you given a choice?
I saw the Xray report online via the hopital's systmonline, and was very shocked by it. I have a non-urgent GP appontment in April.
If you've already had fractures then I don't think AA is enough. You need a referral to a specialist in osteoporosis usually a rheumatologist but sometimes comes under endocrinology. I'd give the ROS nurse helpline a ring theyre so helpful. I'm also putting in a complaint to get to the bottom of how my fractures were missed by so many health care professionals
Thank you tangocharlie. I think a referral will only be made and accepted if I am deemed to have a very high risk of fracture. Not sure if GP will do it. He wanted to start me on alendeonic acid if I had fractures.
I put in a query online to surgery, but haven't heard back. I might hear in 5 days or so about what can be done.
I was diagnosed last October after having a private MRI. My t score is -2.8 and my hips are normal. Turned out my back pain was 6 spinal fractures. I agree with tangocharlie. I don’t want to risk any further fractures and am taking Binosto. I saw an endocrinologist today and am likely to start on teriparatide shortly.
This month’s ROS magazine has an article about the ‘hierarchy’ of drugs and I may be wrong but I think it’s easier to progress on to the anabolic drugs if you have started on the bisphosphonates. I will be back on bisphosphonates after 2 years on teriparatide.
I also recognise the importance of diet, supplements and exercise and want to do all of this as well.
Yes, it looks like a specialist referral is needed for the anabolic drugs.
It is under the Common Pathways number 3 on Page 15 Spring 2025 issue. It is for a "Very high fracture risk', but I'm not sure of the criteria for that.
NB: I was referred last October and was expecting to have to wait until September to see a consultant. Fortunately I got a cancellation. Obviously depends on what area you live in.
Most of the evidence for exercise is that you have to work really hard with resistance exercises, weights and exercises that involve some running or jumping on the ground. It can reduce the impact but not completely curative. It would be best to take the bisphosphonate as the percentage of people getting side effects is small. Worst side effect is necrosis of the jawbone. I have been taking Ibandronic Acid (same family) for over 5 years now. So far no side effects. I am a prostrate cancer patient with almost zero testosterone so very similar conditions. So far seems like I am not in any critical situation except for Ostopenia in L1 and one femur hip joint.
Osteonecrosis of the jaw is an incredibly rare side effect. I agree with you on the exercise. I’ve done loads of research and can’t find any definitive evidence that exercise can cure or significantly improve osteoporosis in terms of bone density and nothing on exactly what exercise or how much. Plus, are people realistically going to be able to exercise for hours a week? Easy to say, hard to do. Particularly if they have fractures and/or have done little or no exercise previously (like most of the population), are not very fit, are over 50 and have other health conditions. Intuitively exercise is a good idea - it would probably reduce fracture risk by improving balance and muscle strength. But it isn’t the solution.
I did it. Major improvements with no drugs. Just weightlifting and diet. In my 60s and hadn’t been in a gym before. Plenty do, but it’s down to choice.
Hi Greenllama. I can totally understand your reluctance to take AA. I'm 68 and was diagnosed with osteopenia in my spine last October, my hips are fine. My problem is that I suffered fragility fractures after crashing down and landing on my sacrum. I only knew that I'd fractured after paying for a private MRI. A GP told me that my pain was an adductor muscle strain (I enjoy running.) My fracture score risk (FRAX) increased because of these fractures. Before this, I was already very active, I eat a very healthy diet which was obvious after full blood tests, but I still have the start of osteoporosis!! I spent three months dithering and researching, but finally decided to try AA last month. My feeling is that I can always stop if I have bad side-effects. I really don't want this horrible condition to progress. So far I'm fine with the AA, I make sure that I drink as much water as I can manage and follow the directions. I intend to get another Dexa scan after 2/3 years then decide whether or not to continue. After talking it over with a rheumatologist, I feel that the benefits of a couple of years of AA will outweigh the risks. Meanwhile, I have joined the gym and go twice a week for strength and resistance training and I have started to run again, 5km on the treadmill which is softer than running on pavements 😉. I'm in a far happier place than when I was diagnosed a few months ago and intend to fight this from every angle available to me.We all have to make our own decisions, but make sure you read unbiassed views and reliable reports (eg ROS website) and remember that many posts are from people seeking advice from having negative experiences. When everything is going well, people tend not to post.
Good luck with everything, there is plenty of advice and support on here and the ROS website. You'll find that once everything settles down and you have time to take in the tons of info that you'll start to feel more confident again.
I'll ask my gp to send me for the DEXA in 2/3 years, but I think everything is decided by budget. If they are restricted by finance, I'll go privately. I paid privately for my test in October because I didn't want to wait several months before knowing. I think it was £225. I still had to be referred by a health professional and just getting that meant a bit of chasing around.When you first need a diagnosis and support, it can be quite an overwhelming experience, mainly due to the NHS not being able to cope with demand. Once I managed to get a face to face with my gp, (after a 3 week wait) she was actually quite supportive. General practitioners have to follow a set protocol and financial restrictions which can be quite frustrating for us.
Hello - I fully understand your reticence to have bisphosphonates.I was diagnosed with osteoporosis in November.T scores in back 2.8 - 3.3 in four vertebrae.No back fractures.I was in shock as I had been very well till an accident last August when I broke my humerus very badly.I was initially offered Romo by the fracture liaison team. I was then told I didn't meet the criteria as my mean score was lower. I'm sure it was a cost related decision. Zoledronic Acid infusion in early December and since then I have had issues with my calcium and pth blood levels.They were perfectly fine before my infusion.I was told of serious side effects but when you're told you've got very severe osteoporosis and we don't want you to break your back,you feel that you should have it.I felt I was pushed down this route.I am seeing my GP next week to discuss my blood results I think you should get as much information as you can and then make your mind up yourself.Do I regret having my Zoledronic infusion.Yes,I do.
totally agree with tango Charlie. The vast majority of people cannot commit to anywhere near enough exercise to help with osteoporosis. I have for years every week done the following: 3x 5 mile runs. 1x swim 2x 1 hour Pilates 2x long hikes 4 hours weights and strength training. I’m very fit. I run half marathons. This did not prevent me getting osteoporosis!
The risk of fractures and their effects is in my view far higher than risk of side effects.
It’s a personal choice. If you believe you can deal with a very serious bone condition with exercise and supplements that’s your choice. To me, it’s like relying on fairy dust and sunbeams!
Usually ,you only know you have osteoporosis if you are lucky enough to be offered a DEXA scan.I was borderline after breaking my humerus in an accident rather than a "fall" last summer.I have been told I have osteoporosis in four of my vertebrae. I have never been fitter so such a diagnosis was a huge shock which I'm still coming to terms with.
Thank you Rhubarbtr, I think I need some meds to help prevent spinal fractures now, as I really want to reduce the risk of future ones. If I can check for improvement after say 2 years I will know if the meds have helped. I can do more excercise too.
Greenllama hello, I'm 68 and never had a fracture despite I have had two big fallens in the streets last year. My Doc prescribed Risedronate. I have started it in August last year, 35 mg weekly. After joining this community I think I should have wait to start. My Dexa showed -3.2 at spine and -1.9 at femur. I think this -3,2 it is not correct since tha last Dexa in 2022 was -2,7. So I will stop when I reach 12 months on Risedronate. Hard decision for you and for us also...
Hi..I was diagnosed in about 2001 with osteopaenia and was started on calcium tablets . In Sept 2024 at 64 I had a fragility fracture of my hip requiring surgery. I was fit and active, in fact I tripped over a horses foot! My dexa still shows osteopaenia but with a fragility fracture and family history I was recommended annual IV Zoledronate. I had the first dose last November with no effects other than feeling slightly fluey.
I came off AA after about a year. I met a doctor socially who asked me why I wasn't getting injections, and I'd never been offered anything beyond AA, so I asked my GP. I didn't know what would happen next, but after a few months, I was called up to get Denosumab (Prolia). I am now on my third injection, so eighteen months in, and I haven't had any more compression fractures. I have seven, though I have not been diagnosed with osteoporosis, but because of my age, it is assumed that I have it. I am between DEXA scans.
I don't think the denosumab should have been delayed beyond the first few fractures; the last one T12 has left me bent over and this has quite an effect on my daily life - reaching items on the top shelf and shopping. I am attending gentle exercise classes at my local leisure centre and I do hope to be able to regain my earlier good posture. I don't know if that's possible, but I just feel if I take care, I can at least avoid any further fractures.
I too hope you can avoid further fractures. I will need to look into the various med options, but I suppose you only get what your GP or doctor wants to/ can prescribe.
It's so difficult making these decisions isn't it? My DEXA results 2 yrs ago were -3.6 but I decided not to go on bisphonates as I felt the risk from them outweighed the risk from fractures. Instead, following advice from this site I started taking Vit D3, K2 Mg and doing a lot more bouncing around - heel drops on particular. I also bought a book recommended here, Your Bones by Lara Pizzorno which added bits. I've just had a second DEXA and am waiting for the results. I'll be very disappointed if the results haven't improved.
No. I've never had a fracture (am touching wood here!!). I was also brought up in Bedfordshire where the underlying rock is chalk. This made the water extremely hard so for 18 years I must have had a lot of Ca which may have stood me in good stead.
Smithie49 that's interesting. Are you happy to post your latest scan results?
I think it's such a personal decision whether to go ahead with medication or not. There's a lot of conflicting advice out there. The ROS advice line is brilliant and helped me to make my decisions.
I was a couple of years older than you when I started on HRT. Both the consultant and my GP refused to give it to me as they only want to prescribe alendronic acid which I absolutely did not want to take: I'm not keen on meds anyway and a friend took it and had awful side effects but because she was only taking it once a week she didn't realise that was the cause of her issues and had many horribly invasive tests.
I've just had my second DEXA scan after three years on HRT and greatly improved. But the GP still wants me to take alendronic acid!! Because that's what their guidelines say!
That's a difficult decision to make.I feel we seem to be pushed down pathways and initially do what the medical professionals say.I think you should get as much information as you can and make your own mind up.
When I was first diagnosed my scores were a lot worse than yours so the decision was quite easy for me to try bisphosphonates. I tried Alendronic acid and had aches like flu and head aches. My body felt so stiff. After 6 weeks of this it didn’t get better so was switched to Ibandronic acid once per month but still had side effects but to lessor extent but stuck to it for 7 years.
My scores are very similar to yours now so I feel the drugs have helped but i made changes to my life style which were stopped smoking, reduced alcohol and a more focussed diet.
I have been on a drugs break for 3 years and am feeling so much better in myself. I will soon have to make the decision to restart however I am of the strong feeling that I do not want these drugs due to well published side effects.
It's so great to see such thoughtful discussions on this thread. As our community is a supportive space to connect with others, we do warmly ask all of our members to be mindful of our community guidelines, and be kind, supportive, respectful, and understanding of one another: healthunlocked.com/boneheal...
Just in case anyone is coming across the thread and wanting more information about osteoporosis medicines, you can find lots more information on our website: theros.org.uk/information-a...
The ROS information has been very helpful, thank you.
The Spring issue of the magazine has info on the meds too, with good diagrammatic illustrations of treatment pathways.
The people on the site here have been very helpful sharing their experiences. Bones and their meds are is not much talked about, so hearing from real people is very supportive. Thank you to all who have replied.
I will hopefully be better prepared for the GP appointment in April.
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