I was diagnosed with 2 vertebral fractures (grade 2 superior endplate fracture) in Dec 2021 after osteoporosis showed up on my DEXA scan in 2020. I am scheduled to have the first of 3 annual zoledronic acid infusion in mid-Feb.
I just wondered if anyone on here has had a similar experience? My back is not bothering me that much, although (ironically) it is causing me more discomfort since I stopped exercising (pilates and bootcamp). Is it ever going to heal?
Also, does anyone know much about Romosozumab? I know it is only available privately but the fact that it can heal as well as prevent further deterioration is very appealing. I am starting to feel like an invalid (I am 49) and pretty miserable.
I am taking plenty of calcium and vitamin D. I had an early menopause during cancer treatment in 2015/2016, T scores recovered between 2016 and 2018 but then fell between 2018 and 2020. My GP has now prescribed HRT for me at my request. Even though I don't want to take it, I thought it might help and I am desperate.
Thanks
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LM100
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I don’t know anything about Zolendronic acid but I’m not surprised that your back is worse since you stopped your exercise. I started to fall to pieces last year when I took a month off Pilates while my teacher was off for a month and I didn’t bother to do any Pilates on my own.
I already knew I had osteoporosis and knew I had problems in my lumbar spine when I developed a very painful sacral area which after a lot of trouble was diagnosed as a sacral insufficiency fracture.
It’s hard to tell how it’s healing but the private physio I saw and who referred me for private MRI scans has told me the sort of stretching exercises and things I need to do (and avoid doing) and my Pilates teacher is a physiotherapist so I’m well taken care of.
I do three x one hour Pilates sessions every week and on the advice of the physio I saw, I do exercises on the days I don’t go to Pilates sessions, basically I work my way through as many Pilates movements as I can remember, I also walk for at least half an hour every day using Nordic walking poles.
So since diagnosis I’m doing a lot more than I was before and I’d say it’s beginning to pay off. I definitely feel better now although I’ve yet to meet up with the NHS physiotherapist I was referred to in July last year when this all kicked off.
The boot camp sounds a bit fierce - although I don’t know what it involves - but it might be worth seeing someone who is experienced in treating people with osteoporosis who can get you sorted out with gentle safe stretching. Just don’t do anything that causes you any sort of pain and don’t let anyone - even a physiotherapist- tell you do do something that doesn’t feel good or try to tell you that pain is ok - it isn’t.
You could also add vitamin K2 - Mk7 and magnesium in along with your calcium and vitaminD3. Look on the ROS website for lots of info about bone friendly diets and also about exercise.
Thank you. My pilates teacher is a physio but said to give it 12 weeks and speak to the consultant before coming back. Not sure whether I will be able to return to bootcamp. I would have to take it steady and probably avoid some things completely. A shame because it helps with overall strength and fitness, and I thought it would help protect me against this! I never had any back pain while doing it or afterwards.My t scores in 2020 were -2.0 (spine) and -1.9 (hip). Spine was -2.2 in 2016 then -1.7 in 2018. I am having another DEXA this week but I have not changed activity levels or supplements since 2020 so not optimistic that they will have recovered.
That sort of settles it then if your physio told you to lay off for twelve weeks doesn’t it. I can see giving up boot camp because I think that can be quite strenuous but Pilates doesn’t need to be strenuous and it strengthens your core which supports your spine and it can also do a lot to help your balance and prevent future falls.
Have you thought about having a REMS scan done to see what your bone strength is - osteoscanuk.com You have to pay for it yourself but Nick Birch the spinal consultant you see explains everything in great detail.
OsteoScan doesn’t depend on using the same MRI machine and operator each visit for accuracy and at your age it might be worth talking to him.
Romosozumab Looks as if it can only be prescribed for a year so you need to think about what happens when you stop taking it. I imagine you may have to switch on to a bisphosphonate to retain any bone you have made and possibly avoid rebound fractures - as you would if you stopped taking Prolia.
I would use the ROS helpline shown on this site and speak to one of their nurses before you start your treatment especially if you want Romosozumab.
I wish I was of an age that my doctor would have prescribed HRT - unfortunately probably because I’m 73 (my spine is -3, hip score is -2.1 ) I haven’t asked about it but I expect if it had been a possibility it would have been mentioned.
I am not 100% sure that HRT is officially licensed as a treatment for osteoporosis. I think I am just fortunate that I am in the 'usual' age bracket so prescribing it wouldn't look out of the ordinary.I have been in contact by email with ROS nurses already but they said it needed to be discussed with doctor so I am going to ring my nurse practitioner once I have had my DEXA and ask if she can get the consultant to call me. All I have had is a letter with the news about the fractures and stating that he would ring to discuss treatment (but he hasn't). Maybe they will let me try HRT only to see if that is enough before sending me down the bisphosphonate route.Will take a look at osteoscan, thanks for the link.
Have you had blood tests to check for secondary causes of osteoporosis such as hyperparathyroidism ? The hospital I attended when I broke my wrist two years ago tested for all sorts of secondary causes -see below - unfortunately there weren’t any - I’ve just got several of the conditions listed plus my age and family history of osteoporosis, so alas there’s nothing that could be fixed to stop it in its tracks.
My OsteoScan results are encouraging, they’re not great but I’m not in the red zone - yet! Good luck with it all, hopefully you can get back to doing some gentle stretches, it makes you feel you’re fighting back.
Thanks, I have added that to my list of Qs for consultant. They did do blood tests at my appt in November but not sure what they checked as I have not seen the results. My mum has thyroid and parathyroid issues.
HRT can make a huge difference. I am over 70 with osteoporosis and my friend of the same age who continued HRT for years after menopause does not even have osteopenia. HRT is possibly the most protective thing any woman can take for her bones at onset of menopause. I wasn't aware of that and I stopped my HRT because I was worried about side effects from long term use. What I should have been worried about was my bones but I didn't know that then.
Hi June25. I had a hysterectomy when I was in my early thirties. I had my first fracture seven years after coming off of HRT. I then went into hospital four years ago this April. I had pneumonia and Aspergillosis. They put me on steroids for that. I then had a worsened back and was sent to physio who got me sent for an X-ray. The X-ray showed I had two back fractures. A month or two after that I felt something drop in my spine. I sat in the chair and after that I couldn’t even walk to the loo. I was in hospital for twelve days. Going ahead to last year. I was finding my breathing was getting bad and my back ached. I went to the Dr and she sent me to hospital. My lungs were fine it was four more fractures up. So I’ve got seven in all. I was given terraparatide for two year and now I’m on Denosumab. Despite the Denosumab I have got four more fractures. I never even thought about alternative therapy. I trusted what I was given. But that doesn’t seem to be working.
Hi Mavery, I have been reading your posts, I must say with some distress for the experiences that you have had. I am hypothyroid and also follow the thyroid forum and it seems to be almost universal that people who did what their doctors told them became worse, or at best no better.
Your posts have helped me wake up to the dangers of osteoporosis and I am really grateful to you for that. It seems to me that there is very little good information out there about osteoporosis, the drugs on offer, or alternative therapies. It is even worse than for thyroid issues, if that were even possible.
I just started regularly reading posts here, I must say with horror, about the consequences of some of the drugs offered by the NHS. I don't have any fractures yet so I haven't needed to choose these drugs so far. I don't want to put people off who see them as their best choice, but I'd just say to be thorough in your research of whatever drug you are considering, especially about what happens if you ever need to come off that drug again. There seems to be a lot of problems stopping these drugs after you've started. Another issue I have found is that after long term use the fracture risk can actually go up. All in all it's a minefield IMHO and hard to know what to do when you need to do something,
For the moment I am relying on nutrition and I just got a Marodyne Liv machine. It's too early yet to know if it is helping, I'll be getting a REMS scan at the end of March, first scan in 5 years since the osteoporosis was diagnosed in my spine T score -2.5, so I'll find out then how much damage the last 5 years has done.
Your score is only point five over what they allow so if you are very carefull about looking after your bones I think you should get some improvement. My problem in the first place was coming off of HRT. Then having the steroids finished it off. When I was in hospital and my back was so bad. The decision was made by the Consultant. I knew nothing then of alternative treatment. My dexa scan was serious so I didn’t have much alternative. I was told I can never come off of The Denosumab which can be really bad and It is worrying but my bones are still really bad. My Cousin has been on Denosumab for a few years and she seems to be doing fine on it.
Yes that happened to me at the age of 70, I had been on HRT since I was 42 after early menopause. For years doctors were reluctant to keep prescribing. So I finally gave in and weaned my self of them. Oh my god it was torture. My problems started from then, neck pain, lower back pain. Sent for physio and after asking for a scan in my mid 70s osteopenia, no explanation just take calcium and vitamin D He said. 4 years later after asking for a repete Dexa scan, I was one point into osteoporosis-2.6 in my right hip. He with no explanation prescribed AAs I researched everything I could and decided not for me. Vitamins only, I have never brokenna bone so will continue as I am and hope for the best. But my biggest regret was coming off HRT. I look back to my age of 42 and think , what state my bones would have been in without it. I am now 78. So if I'm lucky enough to get to 80 without the horrible drugs I will be happy. Good luck to all.
You are very lucky. I was like you and was on HRT for twenty odd years. The Dr asked me a few times to come off it but I hung on as long as I could. I had migraines since I was about three. They then got a lot worse and the Dr thought it was the hormones. I held offa bit longer but they became really bad and I was having a bad head most days. So I made the decision to come off of them. Within seven years in 2013 I had my first break which was treated as a strain. I can remember going to a chiropractor and he pushed down on my back . I shouted at him that he couldn’t do that. I paid a lot of money going to him and he didn’t recognise I had a fracture. In 2018 my back got bad again and the Dr sent me to physio. I am so grateful to that physio person as she asked me if I ever had an X-ray. I went for one and two fractures were found. One was older. I was sent for my dexa scan and it was really bad. A couple of months later my T12 went and I was in hospital unable to walk for about nine days. I was in hospital for twelve days. I thought I was going to be in at Christmas. Luckily I came out on Friday the 21st of December. I could barely lift a kettle when I came home. I was then given terraparatide which I had no side effects and no more broken bones until last year when I went on Denosumab. I had four new wedge fracturesi think it was five months into taking them. I could only take Terraparatide for two years and that’s when they decided to give me Denosumab. They were going to give me Alendronic acid first but I was very sick with just one tablet. So that’s why I had I Denosumab. I don’t know what I could have done otherwise. I’m lucky that I can still walk but I can’t do my house work ironing and I hate doing my teeth. Anything I have to lean forward to hurts.
I should add I think the steroid did more harm than anything else. My bones were already low then but nobody knew. Had I had an X-ray after the very first fracture I wouldn’t be in the position I am now. I didn’t complain enough.
So sorry to hear about all that's happened to you. I have no idea what the state of my spine is. I have suffered many years with lower back pain but apart from a few physio appointments no spine x rays. But my first Dexa scan would have been at least 6 years ago. I asked for a print out of my results. Was Osteopenic degenerative changes I the spine may artificially elevate the values in this region. No scores available to me. Then 3 years later my next dexa scan on the same machine stated. Lumbar spine Not scanned due to query degenerative changes. No explanation given. No follow up on my spine at all. I continue to lay on my back streacher 5 minutes a day to relieve and pains, and it really does help. I have lost in height I was only 5ft 1 and a half inches, I am now just 5 ft. No idea if I have had any breakes in my spine. Doctor has been no help at all. Hope things improve for you. Good luck.
Thank you. I’ve had breaks for three years and more so you can imagine I’ve been in pain. If you’ve had no joy from your Dr then ring your consultants secretary and get her to find out if you have breaks. If you’re not on treatment I would get some calcium tablets. If you go to Holland and Barrett they can advise you on the best way forward with food and treatment.
I went through an early menopause because of cancer treatment in my early to mid thirties. I was put on HRT to protect my bones. I had a bone scan in my forties as my my mother had been diagnosed with osteoporosis I can’t remember my scores but they said I was at osteopenia. Level but very low . I am still on HRT and now in my mid sixties I am under pressure to come off. I had a recent Dexa scan and I am now at the other end of osteopenia . I was prescribed Alendronic acid and had a bad reaction to it. I have always take calcium but now take a complete bone health supplement and I exercise everyday and walk everyday. I am thinking of getting the other scan done privately.
Me too I refused HRT when I was 48. My gp said the benefits outweighed the risks. If only I had listened now I've severe osteoporosis & still horrific menopause symptoms. I'm 60 now & I'm going to look about HRT.
I think that's a good idea. 60 is certainly not too late. Some people intend to take it for the rest of their lives. Get good advice though (probably not your GP), and keep trying if the first kind doesn't work for you. Good luck.
Thanks for all the replies to this. What are your experiences of zoledronic acid if you have had infusions. I haven't had chance to discuss it with the doctor but I believe I would have annual infusions for 3 years and a DEXA. If the t-scores are ok, does the treatment stop?Given the choice, I would rather try HRT alone first but I don't know whether this is an option. I also have no idea how bad the fractures are. My fracture risk was very low, so not sure how I ended up with them.
My osteoporosis diagnosis was discovered at 70 in hospital when having a CAT scan due to bleeding ulcer. Two spinal fractures, one was old, plus one hip fracture. Back pain can be severe so anything available to strengthen my bones is welcome.
I’ve had my first Zoledronic Acid infusion and was fine. I wasn’t able to take oral meds because of the duodenal ulcer. The second one has been delayed due to covid and invasive dentistry. I’m now 74, and am finally able to have this next one early this year.The main thing is to drink lots of water a day or two before, during and a day or two after. This stops any flu like reaction. I armed myself with small bottles of water at the hospital! The procedure is painless, takes well under an hour, sitting on a comfortable chair, and are usually offered tea, sandwiches or biscuits! This was pre-covid so the goodies may not be available at the moment? Best of luck with all your other decisions.
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