I've recently had spinal or vertebral compression fractures and am now talking to various health care professionals and researching my options to try and prevent further fractures in the future.
Because the risk is so high given my age (young at 63 but post-menopause) and long-term steroids I may be eligible for Romosozumab which is quite a new treatment. I'm going to contact the Royal Osteoporosis Society but in the meantime thought I'd see if anyone else has any experoence to share. I'd also love to hear from anyone who has kyphosis (vertebrae squished into a wedge shape basically) and whether you've found anything to help. I'm told vertebroplasty or kyphoplasty are not options.
This has all taken me by surprise as my last DEXA scan les than 2 years ago showed my bones to be in great shape and I thought I was getting enough calcium in my diet.
Thanks in anticipation.
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tangocharlie
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Gosh, that's concerning tangocharlie. My last Dexa was two years ago and showed some osteopenia. I only take Pred and have just resumed AA after a break of a few months. Surgeon didn't mention anything after knee replacement to indicate bones were poor. I will follow your post.
Thank you! I'm singing 'Always look on the bright side of life' in my head whilst trying not to smash people in the face when they tell me I just need to do more exercise - if only!
Totally get that!......I am due for third Zelondronic acid infusion in a couple of months, then dexa scan, prepared for anything......have Osteo in facet joints already. It is a lot for you to decide, so check with whatever you can. Our battles never seem to end, thinking of you, good luck......keep us posted...
Yes, I can’t tolerate meds so dreaded having them, but thank goodness no reaction, fingers crossed next one the same. Feeling very ill with Fibro etc, flooded in pain, severe fatigue and no treatment, so don’t want to have to contend with anything else!
So sorry to hear of your troubles. Although have no personal experience of Romosozumab a very good friend finished a years course of it in February with a great improvement in her T scores. She has had her first Zoledronic acid infusion (needed after the Evenity monthly injections) with no side effects.
However she has RA and has not been on prednisolone but is coeliac and low BMI etc. she was classed having severe osteoporosis but is now in the osteopaenic range. She did find her joints were more inflamed and sore while on the Evenity injections. She also took low dose of statins during the course. ?risk of cardiovascular complications. She had to argue her case to get on the Romosozumab, although having several nasty fractures (not vertebral) there was a debate if they were true fragility fractures or not. She found the ROS very helpful.
Thanks fo all that useful info. Sorry to hear about your friend, her case sounds very complicated. So she had the Romosozumab onjections followed by the Zolendronic? I thought it was a case of either or but I know very little at this stage
I’m pretty sure they say after the year of monthly Evenity injections the beneficial effect gradually wears off so another medication needs to be added although it’s such a new treatment they aren’t sure how soon or for how long. Sadly it doesn’t seem to be just use it for a year and you don't need to do anything else. My friend thinks it was well worth it in her case. I think she will get another Zolendronic infusion next year and then see how things go. PS she had no problems administering the Evenity injections by herself at home. 💐
I think the difference is it does a very good job of increasing the bone density and stability but that must then be maintained for a while, Bisphosphonates tend to maintain but not necessarily improve. I suspect too the nasty shock they got with denosumab/Prolia has made them more cautious.
I think that's what Sarah meant when she said it doesn't improve things just helps to stop further fractures happening. What do you mean by the Prolia thing - do youmean that it made things worse in the long run? That's what I'm worried about with Romosozmab as it's so new
It doesn't make it worse - if used properly and they do now they know about the rebound loss of bone density. And because of THAT experience, they are being more careful with newer options.
I don’t know anything about these drugs but wanted to say how sorry I am to hear of your struggle. I hope you can get something that will help and improve your life.
So sorry to hear your news and concerning for me as when I was diagnosed with Polymyalgia 15 months ago my GP said I had enough calcium in my diet when I mentioned that a lot of people on this forum are prescribed calcium and vitamin D. Sorry but I don’t know anything about the drugs you mention but really hope you find something that helps.
I'd take Adcal at least, with hindsight. When I first got PMR 12 years ago it was prescribed automatically but things must have changed. I would have declined AA though had i been offered it, just because I get so many reactions from meds and foods, I take take any of hte 'prazoles either
I have severe osteoporosis and have had hip and more recently spinal fractures. I am four months into Romosozumab treatment which has got me on my feet again. I have been told that being on steroids for GCA/PMR for a year has not helped my bones and apart from surgery on the hip there are no options for the spinal fractures. They cause pain and discomfort and change lots of things about height and shape and how you can move. So far I have not had major side effects with the Romosozumab. Highly recommend a conversation with the osteoporosis society helpline nurses they are brilliant and there is lots of information that will help.
so sorry and shocked to hear of your experience. What a blow! I recently had a PET scan and was told I have kyphosis and wedging of the spine. I am a retired dentist (ferrible for back and neck) and for the last ten years have been studying and writing (hunched over desk). At times I felt my back was breaking at bra strap level. Turns out I was right !
Seems impossible to get enough calcium in diet and supplements increase risk of heart disease. Have gone back to taking them anyway. Have avoided AA so far and as am down to 5mg Pred I don’t want to start it if at all possible. Dexa scan seems to only checks hip area and shoulders
Will follow your post. Doing exercise and yoga. Fingers crossed.
The study that gave rise to the warning about calcium and heart disease did establish that taking vit D as well meant there was no increase in heart disease. The risk was in young women with a good diet and taking ONLY calcium as a supplement.
Thank you!!! I went off the calcium (kept up Vit D) for ages!! Will get back into it now. Two doctors warned me off it!!!! I did look it up and did not find this. Thank you so much
Too much is not needed so look at your diet and maybe only 1 dose would be enough. There are quite a few on the forum who also take vit K2, not found in quantity in modern Western diets that don't include grass-fed meat and dairy but fermented products contain it. Be careful K2, not K1! And it is said to direct calcium to the bones rather than soft-tissue. Pred tends to reduce the calcium uptake - take the calcium at least 2-3 hours before any calcium supplement (dietary calcium is less of a problem) because calcium taken at the same time as pred reduces the pred uptake!! These studies and the conclusions you hear about are aimed at the worried well who think unlimited supplements will make everything go away or better. Not so, sometimes too much supplement is worse than not enough.
I agree with PMRpro. Vitamin D steers the calcium to bone rather than the Arteries and Vit D3 with K2 -47 work even better at directing the calcium to the bones. Do check the daily recommended values though as some supplements are way over the top.
Sounds similar description to mine although my fractures are further down around L3, but the kyphosis seems to be higher upper in the thoracic region. I don't fully understand from the radiologyreports alone so my first question when I get to see a specialist physo will be to explain exactly what's going on. I think even though the fractures are lower down they put the spine in the wrong place as there is supposed to be an S-shape and the thoracic area bends to counter-balance the lower back, so if one goes wrong the other does too. But how to remedy it seems illusive if you have a wedge and can't straighten the lower part of the back out
I have no experience of this drug yet but I thought I’d just share that I also have multiple vertebral fractures, tho I’m much older than you (78), in spite of taking AA and having largely osteopenic bones. I’ve been taking pred for PMRGCA for six years now and this clearly has not helped. I hate the kyphosis I experience and haven’t yet found much to help other than regular Studio Pilates with a fab physiotherapist. I’m wondering about Nordic walking.
Anyway to cut a long story short I have also been prescribed Romosozumab, tho I’m still waiting to receive my first dose some six months later! I understand some health care person will come to show me how to inject myself, then it’s once a month for one year only, followed by an annual infusion of Zolendronic Acid.
I have found the ROS info to be excellent and suggest a chat with the helpline there. It’s a fairly new drug, not yet licensed for males in the UK so I guess info is not abundant. In the States health care professionals administer the monthly injections but I gather it’s easy to do it yourself. I’m also trying to link up with a buddy in my local ROS group who is on Romosozumab. Good luck and I’m sorry this has happened to you at 63. That was roughly my age when I had my first two spinal fragility fractures, but I now have 9.
Oh Washbrook I'm so sorry to hear your story but thanks for passing on the really useful info you've learned from it. Please keep me in touch with your progress
sorry to hear you’ve gone from great bone strength to compression fractures, I am on 40mg of pred at the mo and as I had already established osteoporosis (despite having been a distance runner for over 30 years 😜). I find alendronic acid upsets my tummy but can take risedronate with no problems. There is also an Alkendronic Acid infusion which is only given annually for 3 years (I think ) Hope you find solutions. Good luck
Thank you for your kind words. I don't understand the exercise paradox - they tell you to do weight-bearing exercise because its good for your joints but recently I've been told by various people eg my podiatrist to never run as it's bad for your joints. And it seems skinnier people are more likely to get osteoporosis. So maybe I'm lucky I've always a been a 'big boned gal' as my hips are OK. It seems we don't know, a lot of wht I'm finding in my research is speculation but not much hard research into for example whether people on Adcal or Alendronic Acid fare better when on steroids than those not on them, or compared to the population who are not on steroids. Maybe with all the scanning technology becoming cheaper and more availalbe we have these days we will learn more in the next decade.
I couldn't agree more re weight bearing exercise. One of my breaks which led to the osteoporosis diagnosis was when I was on a long run and fell ! I have always been slim and was told that thjnner people are more prone to it. I was told it was something to do with calcium and fatty tissued (.??) Who knows ? I like to think we are better off than 20 years ago in many aspects of health but similarly as my Dad used to say , a lot of it is luck . Good Luck
After being on Prednisolone and Omeprazole for 18 months I had a dexa scan and it was found that I have osteoporosis in my spine and hips. I had a zoledronic acid infusion last December and had no problems. I am due to have another two annually. I am still on 5mg of Pred but stopped taking Omeprazole. Hope this helps.
But did you have a DEXA scan before going on steroids? All the docotrs bang on about how steroids cause osteoproposis but it seems women post-menopause are high risk anyway and lack of hormones could be as much to blame? Why aren't ALL women warned about the risks of bone loss and offered Adcal? Mybe we should all have a DEXA scan at 60? However in my cae I've had 2 or 3 DEXA scans and they've all been fine up to now
I totally agree…….I should have had a dexa scan before starting steroids, but I didn’t. It was only after about 18 months of taking them that my Rheumatologist suggested it. She also said “Could you get your doctor to refer you for a dexa scan or would you like me to do it?” I asked her to do it as I wasn’t sure my doctor would and wasn’t even sure of getting a doctor’s appointment!
I was diagnosed when I was 58 and my Dexa scan 2 years previously was excellent. I’ve been on Zolendronic acid since and been on prednisone since March however I have always been on steroids on and off most of my life up until the age of 40 due to brittle asthma. I too had spinal fractures, they noticed when i had surgery to repair L5/s1 in TLIF surgery and I had further spinal damage which I’m waiting to see the spinal team about. It’s just another medication to add to the list and something else to be mindful about. I can’t go skateboarding or free diving anymore ( not that I could anyway haha).
Sounds like you're always trying to look on the bright side of life too 😀. It's the little jerky movements I worry about, like taking a big step down getting out of a car etc or doing the Hokey Kokey and breaking another bone at a wedding coming up in July. I used to really enjoy walking and now have to go everywhere with my rollator/walker, which is very hard, I keep stumbling on cobbled pavements and tree roots sticking out in gravel paths
I too use a rollator and have had a couple of falls as my blood pressure drops when I stand, luckily the only damage done was two smashed from teeth and a small chip in my wrist bone up to now thankfully, it’s just all about being careful and mindful but don’t wrap yourself in a bubble or that’s no life.
Hi Tangocharlie, I had the menopause early because of radiotherapy so was still on a low HRT dose when I was diagnosed with polymyalgia and put on 35mg steroids. I did not want to add further to my drug load, especially when the drugs for bone loss are not always effective so I decided with my doctor to go back onto the full HRT dose. I had a bone density test recently after steroid treatment for the last 2.5 years and my bone density is unchanged. I have no proof this is because of the HRT however I have taken it for 25 years and my bone readings are very good for my age so I do think as a long term treatment for potential osteoporosis especially where it is a family risk, it is very effective.
Very interesting and food for thought, thank you. When I was Googling I stumbled across a private company that does DEXA scans and one of hte price options included a consultation with a doctor specialist in menopause. When I was going through the menopause, which was pretty quick and painless tbf, HRT wasn't an option as they were taking women off it because there had just been a study linking it to cancer so they were taking women off it asap. When I tried to ask about it a few years ago I was fobbed off as it's a complicated issue that can't be dealt with ina 10 minute GP appointment. So I wonder who can advise? I'm having another NHS DEXA scan at the end of June and it'll be interesting to see the change in a few years.
I have got exactly the same problem, but mine may be that i needed a hip replacement, i went for a Dexa scan after my fracture . My bones are really strong.They have said it may of happened because of the way i walk as it took almost a year for the HP, im now waiting for my other hip to be done ! In constant pain. I was told my fracture would heal on its on . Im convinced its the Pred that has done it. Im now on 7.1/2 and going down every 5 weeks by half an mg. I dont wish to take anymore medication ,cant wait to be rid of Pred !
That sounds a very complicated situation and had made me think. I've just had to up my steroids for a few days as I was having a bit of a flare and struggling to move and was going away for a few days. To my surprise I felt so much better and was able to do so much more walking. I wonder if there is an element of inflammation going on in there but when I say that the physios and even rheumatolgist look at me blank. We are going to do another CRP soon as for some reason it mysteriously shot up around the time the pain was very severe at the beginning of this year. The worst pain was around this time last year. I think I fractured severla bones in quick succession, like a cascade or domino effect, made worse by being told it was muscular and given really strenouous exercises to do to supposedly fix it.
Hi tangocharlie, I too have been having multiple fractures in my spine and pelvis and bulging discs etc. I am having Evenity (romosozumab) injections, and have just injected myself with my fourth course of this new drug so it remains to be seen if it is working. I am prescribed this for 1 yr having monthly injections. I qualified to use this drug to replace AA because my dexa scan showed I had SEVERE osteoporosis. I am on 2mg of pred and hoping that Evenity will still work on my bones. Thought I would share this with you.
So sorry to hear we're in the same boat, thanks for sharing your experience. One of my questions is which would be best to take, Romosozumab or Zolendronic but I guess the answer is there is no way of knowing, apart from DEXA scans. Or maybe neither of the above, the answer is somethng else. When I have another DEXA scan in 2 weeks that should give us an idea of what's changed in the last 2 years. I'm told I should qualify for the Evenity because of the high risk from being on long-term steroids.
Very sorry to hear that Tangocharlie and the very best of luck for ongoing treatments. I've had 2 infusions of Zolendronic with no after affects. I am osteopaenic and have scoliosis of the spine but fortunately no crumbling of vertebrae.
Thank you for your kind words. Hope the preventative measures help you in the long run and prevent further problems, that's what they're supposed to do
Sorry to hear of your situation Tangocharlie. I cannot share any details of my experiences in this regard as just yesterday I received DEXA results indicating that I have a T Score of - 2.3. Less than 2 years ago it was -1.7, not so bad 🤔. I am on Pred for 4 years now and currently at 8.5mgs having been up and down since I started. I'm going to write a separate post as I have a few other questions to ask myself and there is so much info on all of the responses that you got that I'm rightly confused to be honest. I feel like I'm now on a new journey again with the osteopenia/osteoporosis 😬. All a learning curve.Interesting post
So a rapid change in T score for you. I've been on steroids for 12 years now, many of those years from year 8 onwards on high doses. Yet my DEXA scoares were always fine and I had no cause to worry until these fractures happened last year. This is an interesting post, I've learned loads today, including how common these fractures are. but looking at the ROS website it seems they're common even if you're not on steroids. Many people aren't aware they've even fractured something and the doctors and HCPs aren't very good at spotting them as they think all back pain can be alleviated by exercise or is just part of old age that you have to live with. Maybe we're looking at the tip of an iceberg and it's an undiagnosed big problem? I'm beginning to think it's yet another area that's been over looked because it happens (mainly) to older women. I know men can get it too, but it seems more common in women
Hi, I am also 63 years young,😉 have had multiple compression fractures in my spine, and I have Kyphoscoliosis, incidentally that has never been talked about via my health team, I haven't raised it to them either. I have severe Osteoporosis and was a contender for Romosozumab injections, which I did go ahead with in April 2023, I finished the year long injections at the beginning of April this year. The outcome for my spine health is good results and they were very pleased on that count but in my hip which has Osteoporosis, no improvement at all. I am now on Denosumab /Prolia, had the first 6 monthly injection in May, the team are hoping this will improve my hip. Before being offered Romosozumab I was on Risedronate once a week but the Osteoporosis team said it wasn't benefitting me enough as I am a high risk fracture candidate.I was very worried about taking Romosozumab because of risks of heart failure and stroke and my family's predisposition to heart/stroke issues, my Sister died from sudden heart failure in her sleep aged 58 years 😔 but in the end I decided to go with it as I didn't want more painful fractures and it has helped me, I am stronger but I still have some back pain. At the beginning of my fractures I thought I'd never be able to walk let alone work again, I have achieved both but have decided to retire earlier than intended and I am lucky that financially I am able to do so.
I received good advice on this forum about Romosozumab and from my caring Osteoporosis Team.
Thanks for all that. Interesting that we and many others who have responded had similar problems around this age. And some didn't have PMR before which makes me lean towards it's an age thing rather than just the steroids to blame. My amazing rheumatologist is picking the brains of her osteoporosis colleagues and they're the ones who say I should qualify for the Romosozumab. I should be getting more info over the net 2-3 weeks. I'm inspired by the fact you're walking again. The pain at first was absolutely horrendous and excruciating, I really can't understand why htis wasn't picked up as fractures. Compared to that I'm a lot more mobile than I was a year ago. Was there anything you think helped you, eg pilates, using a walker or not? Or is it mainly a matter of time healing?
Thanks for your reply.Mainly time, reducing steroids, which greatly reduced water retention and weight gain and a walking stick and the recommendation of walking poles on my dog walks, as they are all terrain. I personally believe that Romosozumab really helped me. 😊
I certainly will never entertain Physiotherapy again, that's for sure 😏
Wow! Reading your post and all the replies is quite an eye opener! I am very sorry that you have had this shocking experience- you and I have so much in common on our PMR journeys that I am wondering what my latest DEXA scan might reveal- results due in a couple of weeks.
I really hope that you find an effective treatment asap and some relief from the pain too.
Yes please keep in touch. Our stories, and those of so many people who got PMR young and are long-termers spookily overlap. I've been saying this for about 8 years, and only now are the expert rheumatologists taking about different phenotypes ie different types of PMR. Change in knowledge and attitudes is so slow and people like us have had the extra battles not just of having PMR but the difficulties getting diagnosed and treatment and wrong info being given to us in the early years which I'm sure hindered us. I'm tired of being a Pioneer, it's been like bashing my head against the proverbial brick wall sometimes. Thank goodness for htis forum giving me the strength and knowledge to fight on and take on the establishment
It's been hard enough battling PMR but we've also had to battle all the medical ignorance too. I feel things are changing though, and I like to thiink us youngsters (I'm including you here PMRPro) had a part in that, and things will be easier for the next generation. It gladdened my heart to listen to some of the PMR conference a few weeks back with the likes of Drs Mackie, Dasgupta and Dejaco and others. They have come to realise that PMR is a serious illness, to be taken seriously and dealt with by rheumatolists rather than GPs with scant knowledge of diagnosis and treatment. I think we were dismissed, still are dismissed, because PMR was seen as a mild discomfort that miraculously goes away and only affects older women who hobble around in their old age anyway, Dr Dasgupta said it was a big mistake to palm it off to GPs. Not all rheumatolgists are up to speed on it but it;d be easier to train those who aren't than try and train every GP.
My heart goes out to you. I have 9 vertebral fractures 2 of which were vertebroplastied in Sept. 2023. These were L1, L2. After that the vertebrae on either side of the vertebroplasties, fractured. My Osteoporosis Specialist says 'no more plasties'. There is another forum on Health Unlocked called Bone Health. They may have more answers....or not. Also, I had a Zoledronic Acid infusion in October 2023. So far no side effects. I am in excrutiating pain at the moment, as I did something to myself last week. Sometimes when we're feeling better, we overdo. Unsure if a new fracture or badly spasmed muscles, the pain and tightness from which wraps around my entire rib cage. I have severe osteoporosis and PMR. I was progressing well until last week. I walk with a walker (the kind with the seat). Never anticipated any of this for my life, but who would. Talking with my GP tomorrow as the Osteoporosis Specialist wants xrays. I take Acetaminophen plus codeine for pain, but that is not helping much anymore. I do take Pred for the PMR and trying to taper down. There are quite a few info videos on YouTube regarding compression fractures and living with them. I won't mention the lady's name, but if you want to send me a private message, I'd be most happy to share. My T12 had a wedge, but now I'm thinking something has shifted there. I do take 3000 mg D3, K2 and 1000 mg calcium in my Tums, plus whatever I get in my diet. The best thing is to stop bending to the floor (get a grabber) , stop reaching up high, stop twisting or be very careful, no heavy lifting, no reaching pots from the oven or off the stove. Keep moving. I'm not sure of the meds you mentioned as my Rheumy is very negligent and these haven't been offered. I couldn't tolerate AA, thus the infusion. I also have a nasty gall bladder which is coming out July 23. Thank goodness. I've had both cataracts done. The second one 2 weeks ago. These were caused by the Pred. These surgeries seem to have gone very well. Seems like a lot, I know. Not life threatening, but definitely life changing. All the best my friend.
Holy cow, 9 fractures!!! That must be so painful. It's been absolutely excruciating for me. I really can't understand why it wasn't picked up earlier, surely the pain should be a diagnostic sign? 'plasties' were ruled out instantly in my case as my rheumatolgist says they only cause problems to the surrounding bones which is what you found. I wondered if there might be other forums worth trying so might join the Bone health one or that might lead to information overload. May I ask how old you are? Re the spasms, luckily I have a friend who is a GP and she said she prescribes a two week course of Diazepam for back spasms, but when I tried to get it from my GP they refused and even when I took myself to A&E because I was in so much pain and I begged for it I only got a few days worth, which is ridiculous as you only get addicted to it if you take it for more than about a month continuousily. We women are just supposed to shut up and stop moaning about a bit of pain. I'm working my way through all sorts of videos on Youtube from the ROS and Margaret Martin, a Candian physiotherapist who seems to know what she's talking about when it cmes to compression fractures. I kept saying I needed scans but I got got totally dismissed and gaslighted by the physiotherapists who kept telling me it wa muscular. Thanks for all the practical tips. The hardest thing is trying to stand and walk upright but I'm sure it's important ot stand straight and not stoop. I've always been able to bend OK. Lifting anything even a kettle is very painful as is getting in and out of bed and lying down on my front or back. I try not to twist and only move my back in one direction at a time. As I said above, I am thoroughly sick of people who have no idea what they are talking about just going by their own ignorant ideas telling me I need to ditch the walker and walk unaided to build my muscles up I point out that yes I need to build up muscles but say I'm trying to figure out how the feck to do that when my bones are compressed into a wedge shape. i keep telling friends that people end up on walkers and mobility scooters not because they're lazy which is how they are judged but because they can't walk!
I hear you. I did something to my back 2 weeks ago. Going to GP today to see if xray shows another fracture. In agony with the muscles atm. Bedrest and moving slowly. I do take clonazepam for anxiety and it does help to relax the muscles, but one 0.5 mg per day is not enough and GP will not prescribe more than one. Perhaps if I cry for her today as I have been with the pain, she might try it. It is recommended for vertebroplasty pain. My two initial fractures were missed by the rheumy as she didn't read the CT report. She had sent me for the scan because of back pain. Found the report at the ER 6 weeks later. After that, the plasties, after that more fractures. No infusion was offered until October. This all began in the June prior. She also had said the October before that I was osteopenic, so osteoporosis was missed and should have had the infusion almost a year before. Ugh! Oh I can bend, but apparently I bent the wrong way. It doesn't take much. Please be careful. The Osteoporosis Specialist said I would be babying my back for the rest of the year. There is a Margaret Martin video re compression fractures. The woman uses a light back brace to keep her from doing the things she shouldn't. She also has a housekeeper and a husband which I can't afford and I live alone. I may invest in one. We shall see what GP visit brings. She adked me what they would do if another fracture! I'm like, you're the ruddy doctor and she would try an extra clonazepam. I don't know. Hopefully it's 'just' muscle spasms and muscle relaxers don't work. Maybe myofascial release? Pretty much married to my walker atm and I was just beginning to get around without it. No falls. GP asked me if I had any falls that I would remember. Um...I think I would remember if I fell last week. I may be 74 but all my faculties are intact. Standing for short periods only. Walking is easier. Keep walking as it's important to have strong legs. I haven't tried swimming, but it's in my mind to try it. Our pool is fairly reasonable. Ok...going now. Sorry for long post but it's a story that started a year ago.
What a terrible tale, very like mine, so many opportunities missed. I'm going to be putting in a complaint so that lessons can be learned but for now my pririty is to get moving again and do anything to prevent further fractures (if htat's possible). I've watched the MM videos and one of my questions is should I get a back brace? The dismissive answers I've got so far is no, that I need to build muscles up but I think a brace is the way forward, not all the time but as she says preventative as well a supportive. Physios are so quick to say 'no' to things and think exercise alone cures everything. I walk, mainly with the walker but am trying to build up the steps without it, and hoping that I should actually be doing that and it's not making things worse. I go swimming once a week and sort of do breaststoke frog like kicks but lying on my back, I can't do breaststroke but can manage a kind of front crawl. I try and walk around and do exercises in the pool and go and dangle in the deep end to stretch out. I feel terrible afterwards though so not sure if it's doing me any good. It's just a trotted out general platitude that exercise is good, but I want more specific advice. I'm tempted to sign up to see Margaret Martin online as she seems to be the only person who knows what she' talking about and it makes sense. I'm also hopeful I'm being referred to a physio recommended by the osteoporosis dept and she'll be ore able to advise than the generic physios who toally mis-diagnosed me and got me into this mess. Keep goign and keep in touch with your progress
Just a quick note to let you know I have a new compression fracture at T8. Unsure what the plan going forward will be. I don't see the Op Specialist until July 12. Ugh.
She also has a housekeeper and a husband which I can't afford and I live alone. I may invest in one. A housekeeper might be a good investment, not sure about a husband, I'll pass on that one. I have invested in a cleaner who comes every 2-3 weeks as I can't lift the hoover or clean the bathoom, even getting into the shower is difficult let alone scrubbing it 😆
Hiya. Yes seriously considering a housekeeper. No husband for sure. Had enough of them! Lol. Going forward - no plan as I expected. I do as much as I can when I can. I've put my little washer on a dolley and it's much easier to move. Still seriously considering the lightweight brace. My grandson, who's just gone 16, will be coming in to clean for me on occasion. It'll give him a little pocket change and something to do for the summer months. I still cook supper every night and even freeze some for those nights when I just can't. Today its 28 Celcius in Nova Scotia and humid. So not a lot getting done. A heat wave for summer solstice, which is tomorrow. I refuse to be bedridden for another summer. Thanks for your responses. I appreciate them.
I had AA for 1 year, since then I've had denosumab for 3 1/2 years, six-monthly injections. The dexa scans in this period have only shown osteopenia, but even so I have accumulated at least spinal compression fractures, so the conclusion was that I have got osteoporosis, whatever the dexa scan says. I haven't been offered anything else, so I'll be interested to hear the result of your research.
Interesting, thank you. The conclusion is that I have osteopenia or osteoporosis as the definition of those is that you get bone fractures like these. As far as I am aware, there is currently no diagnostic tool that can see what your bones are like on the inside under the hard outer shell. I'll be very interested in the results of the next DEXA scan because as i was fine two years ago it gave false reassurance that I was getting enough calcium. And then it's where do I go from here, is the Romosozumab best even though it's not been around for long so presumably we son't yet know the long-term benefits over other options? maybe DEXA scans are more useful for predicting osteoporosis in hips rather than for predicting spinal fractures? So many questions and still so much yet unknown but presumed and trotted out as unquestionable and inalienable facts. Like PMR and GCA go away automatically after 2 years, how dare anybody suggest otherwise?
don't forget natural way to strengthen your bones with proper exercise. Strength exercises will increase muscles mass and will also make your bones stronger. At age 75 I have no decrease in bone density at all even after 7 years of PMR/pred. I did take calcium supplements and K2 while I had PMR and spend lots of time outdoors (natural way to get vit D).
true.. not a problem where I live though. In general I would take natural sources over meds. For example, I did not take K2 supplements; instead I consumed fermented soybeans (natto) daily.
Yes Im sure exercise is good provided it's the right kind of exercise and doesn't make things worse. It is so easy to fracture spinal bones, even by just turning over in bed according tothe Royal Osteoporosis society videos. My research suggests that when you first get the fractures they need to be allowed to heal and not moved much, almost complete rest apart from things like gentle neck stretches. And now that I'm in this mess with a wedge and kyphosis and my spine all out of alignment, what can I do to improve things? These are the questions I'm trying to find answers to. My Vit D has mostly been fine and I take supplements in winter. My rheumatologsit points out that even some people living in hot countries or active outdoors in the sun can still have low vitamin D levels. A wider question that'd be interesting to know the answer to is whether people who get compression fractures have low vitamin D, whehter there is a correlation or even a causation?
my heart goes out to those who already have fractures. Hoping the kaiphosis doesn’t progress. Very interesting and frustrating tales here. There are so many gaps in our knowledge and I have certainly found wonderful physios and terrible even dangerous ones.
I do wonder about how to fix the kaiphosis. I am in Aus so lots of sun but then what is the right amount of Vit D blood levels. A naturopath told me go for a level of 100 where “normal” here seem to be about half that.
Am just hoping that Pilates and gentle exercise bending the other way plus back onto high calcium diet and some supplements will help. Here’s hoping.
Very interested in maybe going onto a course of HRT ? Will try all nature first
HRT does sound an interesting option but it may be too late for me now, I'm well past menopause. if only it had been an option 15 years ago. I may pay for a private consultation as no chance of getting to talk to a GP about it and the pros and cons. Meanwhile like you say, eat more calcium. ATM I'm scared of fracturing more bones if I bend the wrong way or jar my back so am only doing very gentle movements.
I'm certainly not endorsing or advocating going private, though can totally understand why people are doing so and I have done before when trying to get answers that I needed. But I stumbled across this and presume similar are springing up around the country. They offer more than just a DEXA scan with all kind of options to discuss results and consult with specialists. It's only because I have a fantastic rheumatolgist that I'm getting any help at all and if I didn't have her I'd have paid for private x-rays and a DEXA as I've been in pain for 16 months now
Just a thought......given your dexa was normal, have you had a bone scan etc? I.e are these definitely osteoporotic collapse/s or is there some other cause for the bones going soggy? Just in case y'all are barking up the wrong tree.......apologies if this info is somewhere in the threads.
What do you mean by bone scan? I've had x-rays, which discovered the fractures. Also CT scan and MRi which didn't really yield anything new but ruled out things like cancer
When I asked Dr Vandevelde if there was anything that could look inside your bones to see the state of them she said not really there are some scanners but not for this kind of situation, presume she means they're rare and for research
I was trying to ask ,in a roundabout way without causing you to take fright, that they had excluded metastatic disease. However happily this has already been excluded.
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Would love to hear your experience about Zolendronic Acid Infusion please.
Any experience of having GCA and Actemra (TCZ) being discontinued while still trying to taper steroids
Globus sensation and PMR/GCA
