Not a very flattering picture, my bum definately looks big in this!
Following on from previous posts, I have suffered 4 or 5 vertebral fractures aka spinal compression or fragility fractures. I've now been fitted with a back brace which seems to help posture and also stops me bending awkwardly and risking more fractures. Anyone in the same situation might want to consider getting one. Mine was from a referral by an NHS physiotherapist but here may be other routes. Looking at the brochure that came with it the company Spinomed also does versions for the very active who run, dance etc.
I also started on the Romonosumab (Romo) this weeks and apart from a minor reaction am fine. It is a new-ish biologic med for osteoporosis given to people at high risk of breaking bones. It doesn't fix the broken bones but helps prevent it happening again.
I would urge everybody to look after your bones, I was totally caught out by this as I had a positive DEXA scan so was on the false reassurance I would be OK and so were my doctors.
I'm not exaggerating to say this is a catastrophic life-changing thing to happen and although pain might improve in time the fractures cannot be fixed. As I have said in previous posts, there are many different meds available to try and prevent osteoporosis and you need to work with your doctor to choose what's best for you.
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tangocharlie
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Thank you. It hurts a bit because presumably I'm using muscles and ligaments that haven't been used for a while, but already I'm walking better with it on so it will definately helps, I just need to build up using it slowly, start with a few minutes a day
😆😆Never say never eh 😆I'd be happy if I can do my favourite walk in the world again one day, along the river Wharfe from Burnsall to Grassington in North Yorks. I really miss walking, and travelling
What a trouper you are eh?Let’s hope you can get winter over ,build yourself up ready for next spring!Beautiful day today in Suffolk,felt a bit weary but made myself do 4 hours gardening.Shall probably really regret it tomorrow but felt SO much better being out in the fresh air.Really lifts the mood being out in the elements doesn’t it?Nice and gently as far as you are concerned eh?xxx🤞🏼🌼😜🌞🌞🌞
4 hours? you're mad. 😆You're right, I need to think positive and assume things will be better by spring. At risk of sounding a misery, which I'm certainly not, I'm more of a naieve and gullible optimist, but I don't believe in hoping. As Nietzsche said, something like 'its pointless and only leads to double disappointment'. Bet he wasn't much fun to be with at parties ... Totally agree with the being outoors and moving thing though, so on that note I'm off t't park on the rollator ..
Yeah but if I get one of those off-roader all terrain rollators ... and if it ever stops raining (leaves and mud get stuck in the wheels) ... who knows .. It's gorgeous in autumn
Empathize with you TC. I wanted to get a soft brace. Osteo Specialist said if I can't stand a bra ( which I cannot ) then a brace would be 10X worse. For your sake, hope not. Let us know how you make out with it.
I wondered the same as it is pressing on my lower back where I get most of the pain, but I've noticed that if I do press my hands in that area it helps. We can but try. You have more fractures than me so it might not be suitable, I don't know. I just managed to go for a very short walk with it on but without my rollator and that's something I couldn't do before.
So sorry to hear this TC. I have had positive DEXA scans and therefore I was under the impression that all is well with my bone density. This is quite alarming to hear that despite positive DEXA scans, you have still been caught out and have osteoporosis. I hope the back brace and new neds work. Take care xx
It's certainly left the rheumies scratching their heads. Although when I started to read up on DEXA scans (see my earlier posts) they, or positve ones anyway, don't really give us any meaningful information on their own. If you're not already taking some kind of bone protection I'd urge you to think about options
I'm not on osteoporosis treatment pur say as my DEXA scans are good, but I do take potent supplements which contain high levels of calcium and vitamins d, as well as other trace minerals and have helped my sJIA and AS flares and helped with my sleep. I also eat a healthy diet including leafy greens and exercise as much as I'm able, and walk most days for about a mile and a half, including an exercise routine. I am hoping this is enough to help prevent osteoporosis. Fingers crossed 🤞
No knowing whether it's enough or not, but all sounds good. According to the experts try and throw in activities that make muscles pull on bones as that apprarently builds them. Like stomping as you walk, skipping if you can manage it etc, mini jumps
Thanks Tangocharlie for the extra tips, although with many extensive hip replacements I may find them difficult to do. I've tried some things similar to that in the past and have knocked myself up, but I will have a small go. A little is better than nothing! Many thanks xx
Hope this helps you. Was diagnosed last few months with osteoporosis and now cant have a spinal fusion that two consultants say i need. (Already had two lumbar surgeries in last 12 months). It really is a bugger!! Ive had an Aclasta infusion but its all a bit of a mess. I really hope the brace helps you even some way with the pain and you can get about a bit more. Thanks for information, it all helps us.
I have to see the rheumy next month to see what she thinks about strengthening the bones. Pain management guy was very scarily gloomy about putting screws in even if i could do anything with the bones, it wont be a quick fix anyway, so will just have to see. The first surgeon was all gung ho about doing the surgery which is even more scary, god knows whaf way it would have gone, even in my laymans head it didnt make sense to put screws and a cage into bones that are not right!! Honestly you just have to be ten steps ahead of them, as you unfortunately know. We can only keep our wits about us which is very stressful.
I've certainly learned to question everything and get more than one opinion before agreeing to anything after similar experiences. Very early days but I have a feeling the Romo might help me, just a gut feeling as I already seem to be in less pain
So some good news amongst the really bad. It sounds like this brace is going to improve your quality of life , thank goodness . Are you going to have to wear it for life?
I have absolutely taken on your experience added to the talk about bones on the members’ day and will be talking to my Rheumatologist next week about which bisphosphonate ( spelling?) to take. It is quite scary!
Personally, given our high risk of fractures due to the steroids, and you're a long-termer like me and similar age, I think Romo is a great option but s/he may not have even heard of it. The ORs website has some great info about treatments. It is scary. As for the brace, I hope it will help as it seems to be doing even though it looks like hte pain might get wore before it improves as the muscles etc get used to it. I have no idea if it's for life, I think as in everything, every case is different. I know I have to be extra careful about how I move and avoid shocks and jolts to my back until the Romo starts to kick in which could be about 4 months so it should help that. Let us know how you get on
After my PMR diagnosis I was prescribed Alendronic Acid because a DEXA scan had revealed that my bone health required some help.
After 3yrs of taking this medication and engaging in lots of bone strengthening activities, the next DEXA scan showed a very significant improvement. So much so, that my rheumatologist allowed me a 2yr break from the AA.
I'm having my next DEXA scan next week, but in the meantime I've sustained a stress fracture in my foot.
The orthopaedic consultant said that a large bunion on said foot is displacing my toes which in turn has constantly been causing extra pressure on my third toe when I'm walking/standing etc, and together with my osteoporosis has led to a stress fracture of the metatarsal bone.
This has shown me how quickly bone health can deteriorate and how sometimes (even when we don't want it to be) there's a genuine need to take a medication.
In 2014 I had a bad fall at a uk airport and fractured my T11 vertebrae. A recent heart scan showed another (old) fracture of T12 too.
I currently am not experiencing back pain unless I walk for long periods but I'm fully aware of the need to now be more proactive where my bone health is concerned.
Your advice is a timely warning to not be complacent where bone health is concerned so I'm now back on a mission to improve my situation as much as is reasonably possible.
I went to a meet up of the local ROS group this week. Some people on AA said it had improved their DEXA scores but others said it had no effect. There were about 20 women there so I didn't take in all the info, there was somebody on just about every option from AA to Prolia to Zoledronic to the one i'm on, Romo but it made me think I hope someone somewhere is comparing people on different meds and progress and this isn't all just guesswork
I doubt you can compare things that simply. Oral bisphosphonates are hoped to maintain a status quo - if your bone density improves that is possibly a positive but it doesn't necessarily mean they are stronger.
It's probably hard to say what percentage of my improvement was down to the AA alone because I worked really hard at supplementing their effect by ensuring I was:-- eating a calcium rich diet
- taking up yoga for osteoporosis.... (and practising it for an hour each day) at least five times a week
- going for regular walks
- muscle strengthening exercises at gym
- other low to medium impact activities
So, something worked but not sure what. Lockdown meant I could dedicate as much time as necessary to such a regime. Now of course, that level of discipline is not feasible.
Just a quickie. I found taking Alendronic acid every week a complete bore. I switched to Ibandronic acid taken once a month and that was much better. 👍
Investigate just been for a dexa scan (no results yet) and the radiology nurse explained there were lots of options for treatment....a weekly tablet ( like I previously took) an injection and an annual infusion like you had.... plus other options too. I really need to do some research!! I was told that once you have the infusion you have to have them for the rest of your life! Is that actually true?
I think that applies to Denosumab /Prolia - and that is usually given after other drugs have been tried. Maybe have a look at these - and speak to ROS helpline - or look at their videos
No it isn't!! It is denosumab that you either take for life or switch to a traditional bisphosphonate to stablise the bone density that has been gained. I suspect it will be the same for romosumab to be honest. The bisphosphonate infusions are started as a 3 injection series, at 1 year intervals, so over 2 years. Then it depends on the situation.
I am just wondering if my Accrete d3/ calcium tablets are enough to protect my bones. My bone density scans showed good bone density but after reading your story I am feeling concerned. The only bone I have ever broken was a chip off my hip in a car crash when my knee hit the dashboard and dislocated my hip.
I think, you are doing really well and hope your pain decreases fast.
Who knows? I don't think Adcal does much, in fact the video with Cyrus Cooper and Tim Spector said taking calcium was useless. But combined with the exercise and diet you might be OK. I'd look into the various options and weigh them up
Bless you, you have been through the mill. Glad you feel the brace is helping - you will get more used to it I’m sure. My 12 year old grandaughter has scoliosis and is supposed to wear a similar brace for 22hours per day. ( she manages about 20 hours). Minimum 2years. Its to hopefully prevent the need for surgery. She has got used to it more now and it does help with the backache. Its well worth persevering as it does get easier. Best of luck to you - I really hope it gives you relief and a bit of security.
Aw bless, I hope she sees it as a superpower cloak and doesn't get teased, kids can be horrible. Some of the paralympians like Kadeena Cox have scoliosis and I think a famous pop singer and it hasn't stopped them
hard luck, that’s really tough! I asked my Dr if I coukd have a dexa scan back in the Spring. He said he didn’t think so as I’d had x-rays of hips & ankle & bones look OK. He said he’d try to get me one, but he didn’t think he’d be successful! I had to stop the prevatTive pills as lots of dental issues, so nothing for two years +. Now! I hope it helps, & thanks for the warnings.
Because of Osteoporosis and OA in base of spine I have been thinking when I see GP on Monday to ask for second Dexa scan, was wondering if they are expensive, so many people on here refused one! last one about 3 or 4 years ago.... Going to have a lot to discuss at my appointment....I'm making notes!
There are private DEXA clinics springing up all over the place, there's one in Leeds has various options from around £150. You shouldn't have to go private though, explain to your GP that when you do the Frax assesment you're high risk with age, steroids etc. They should have done that with you
he’s not an awkward GP…he probably forgot as he was moving from the injection he’d just given to me, to the next patient. The discussion was in the corridor. Will ask again, need to see him soon.
Hi tangocharlie, I know you've been through hell lately, so it's good to hear you being so positive with this new treatment and your brace. I bought my own brace from Amazon, which was just basically a wrap around elasticated broad belt that kept riding up. This was after I fractured my T2 vertebrae (undiagnosed for 8 months) and was in agony.
I persevered for a couple of weeks and it probably made me straighten my posture and helped with the initial healing, but couldn't bear it after that.
I'm due to have a zoledronic acid infusion on the 16th of this month after putting it off for 2 years (silly me). So I'm wondering about this Romonosumab you're taking and if you can use it even after you've had the infusion or would it be an either/or situation?
Also, because of the cost to the NHS, did you have to plead for it or was it offered without asking?
My rheumatologist was going to give me the Zoledronic infusion but when she picked the brains of her colleagues they said that as I'd already had frctures I was high risk of breaking more so hould qualify for the Romo. So on that basis you should qualify. As for the brace I think it needs to be fitted to be of use. I used a sacorilliac belt at first but it would hurt to wear it now. You really need expert help now so if you have a rheumatolgist go via them and if not explain the situation to your GP. If you break one bone you are at hgh risk of breaking more, that's what happened to me. Because the first one wasn't diagnosed I ended up with 4 squished vertebrae, act quick, Romo is the best option. After a year I wil go on to the Zoledronic acid once a year
My consultant told me Romo is best given first then followed on with Zoledronic acid infusions. The Zoledronic is needed to keep the gains achieved by the Romo.
The same applies with Teraparatide.
Romo is not dished out freely, a full health assessment is done first to make sure the patient fits the Criteria for it. x
Thanks for that. I have a telephone appointment with my consultant at the end of November to discuss Romo. What with the wait for the appointment, plus the tests involved, heaven knows when (if I'm a suitable patient) I'll get the flippin treatment. I passed the criteria tests for Actemra more than a year ago (which didn't work for me), so maybe I'll be ok, fingers crossed.
No history of those, though I do have diabetes which they say holds a risk of blood clots. They wouldn't let me have HRT because of that risk with the diabetes combined, even though those risks were discounted later on. Anyhoo, we'll see how it goes.☺️
Because they haven't been told otherwise. I have some sympathy for GPs, they can't be expected to know everything especially about relatively rare diseases like PMR. But when they look it up, the info they read is often wrong and out of date the charity really needs to address that. The last guidelines were published in 2015. I know the great and the good rheumies are working hard on updating them. Even some rheumatologists still think it just lasts 2 years and they really should know better
There is a committee set up for the next lot of guidelines to be developed. However - I understand the chair this time is a believer in the 2 year myth so it is devoutely to be hoped his opinion and approach doesn't dominate.
Nah. There were 3 patient representatives on the 2015 committee but seeing the names 2 of them were not likely to have said much very loudly!!! Christian was lead author last time and Sarah was there. So was Pease ...
Pease was the one who told me I couldn't possibly have PMR because it would have gone in two years and anyway I was too young at 54 (at the time I saw him). It's a good job he asked a new rheumatologist in the department called Dr Mackie to do a study of patients who had PMR and how they were getting on. She found that over a quarter of the patients were still on steroids over 5 years later. I hope he learned from that. She once said at a talk she gave that it was one of the motivators for her, she thought well what do we do with these long-termers, we can't just leave them? Thank goodness for glimmers of light like her
Thanks for the warning. My last DEXA scan in 2021 was T =-1.1 NoF and I stopped taking AA when I got to 5mg pred. However following some exercises given to me by a physio my back has gone for the first time in 25 years . I have a history of back trouble since my 20s but learnt how to prevent problems by not doing what I know triggers it. This physio insisted this exercise would be OK despite my protests. It involves lying on my back, knees bent, and raising my bum off the floor. I knew this to be a no-no for my back. It was supposed to be to help my knees!
Anyway I'm now concerned about fractures, osteoporosis etc so I might ask for another DEXA scan. I was told no last time!
Thanks for sharing, glad you're getting sorted. Good luck!
NO NO NO. That's the kind of thing the first physio had me doing because she was insistant it was only muscular and it made things worse. If you have broken something that's the last thing you should be doing. Insist on a spinal x-ray
Thanks for replying. I had an XRay 3 months ago and it showed severe arthritis in the spine and facets at L5 S1. The back pain I had from the exercise is almost gone now and I stopped the exercise straight away. It is the same pain I last had 25 years ago when I tried yoga. I have a physio appointment for my back at a different hospital on 23rd October, my GP wants an MRI doing but apparently they're not allowed to order these now, so she's hoping this new physio will.
It's interesting though, that I had terrible back trouble in my 20s, which started with coming off a horse and landing on my back, but no GP ever referred me, I was just told not to be so stupid and to take paracetamol! I was crippled for 8 weeks and this recurred through my 20s and 30s.
At the age of 4 1/2 I fell out of a car, landing sitting on the grass verge. I had a skull fracture but the spine was never considered as far as I know. But I am told it could be the source of my back problems that have also dogged me throughout my life.
Have you ever had a spinal XRay since? Would it show old fractures? I'm wondering if I should ask for a whole spine XRay as the last one was just for the lumbar spine but it was the thoracic region which was injured in the horse accident when I was 21.
Did you find GPs at university were very uncaring? Ours were dreadful. I think they thought all students were malingerers. Boy I have some stories there!
I've had several - my rheumy here is very quick to look with back pain.
Don't think GPs were that bad but I didn't go much! I did have one very funny - if infuriating - experience, I had all the signs of a renal infection (even I recognised that) but when I went to the GP I always managed to only get to see the junior partner. He decided I had marital problems and fancied him so kept coming to see him - bless his heart!!!! I managed to identify when it would be the Boss doing the surgery session - who as soon as I started the symptoms list wrote the emergency referral for a kidney x-ray with contrast. Which duly showed scarring on the kidney - it really was pretty advanced. I would have liked to be a fly on the wall!
Wow! You are very forgiving. I wonder if he learnt his lesson and is still practising. Most bizarre. Sounds more like he fancied you! I think I only went to the doctors 4 times at uni, once for the horse accident, once to ask to go on the pill (I was told no, he didn't agree with it, he didn't offer me any alternative either!), once when I had so much pain from thrush and I was shouted at for wasting their time, and lastly when I felt really ill during my finals and was told "I was ill during my finals and I didn't get a medical note, so why should you?" Turned out it was glandular fever. I still got a 2:1 though.
That's awful. We had to treat GPs like gods in those days and tremble in our boots as we were talked at (late 70s and early 80s for me), do as we were told. There was only one female doctor, even though I was at Liverpool Uni with a thriving medical school, not a great example. Glandular fever was rife, they even called it the 'students disease' I think, I don't know if it was an old wives tale but you got it from 'kissing and partying' so of course it was victim blaming, we shouldn't have ben having fun. One of my friends had to miss a year and eventually dropped out because of it.
Yes it was rife. A friend had it during her A levels and went on to have what was then called Post Viral Fatigue, now called ME or CFS. She had to drop out too.
We had doctors from a local surgery come twice a week. I think they must've sent the worst ones to us! This was also late 70s/early 80s.
There may even be a possible link between getting this virus and going on to get other autoimmune illnesses. The Epstein-Barr virus seems to be implicated in lots of things. Meanwhile so many poor people self included were dismissed by doctors calling ME that I got in the mid 80s 'yuppie flu' and accused of being work-shy. It's only that so many people got long covid that at last hopefully resarchers are looking into it
Where is the rest of your costume, TC? You look like you are playing a small part in a Star Wars movie at a Halloween party. Very COOL and hopefully comfortable and effective. If it helps you move and supports your bones then it’s a win win. Well done for leading the march on bone protection , a timely reminder to us all.
Bless you, I’ve had bilateral fractures L5/s1 but had TLIF surgery to repair, had osteoporosis since 22 now 62 years . I’m terrible, I love baking for my family and it’s the bending that gets to me. Hope this helps you.
I know a friend of a friend who had that and others who offer advice say they had a friend who had 'this cage thing put round their spine' but the docs haven't mentioned it when I've enquired whether any surgery would help. I think I will ask more about it and for a referrral to orthopeadics as they all work in their own silos. At the moment I am hoping that somehow my back adjusts and adapts to its new curved state and I'll be able to straighten up a bit and walk again as muscles and ligaments improve, so will see how things go. Loads of women have what is patronisingly called the Dowagers Hump yet still manage to walk. Why should it be seen as inevitable for women?
LOL I'm building up, wear it a few minutes at a time. It's a bit difficult to sit down but then that's a good thing - sitting aint good for us is it so it's a timely reminder to get up and move more. If I sit the best thing is to have lower back supprt llike a rolled up towel. Luckily now it's winter I put a T-shirt on first then a jumper or fleece whatever so it doesn't really show apart from the belt at the front. Maybe people wonder why I'm wearing a rucksack underneath my coat. I saw a really nice office chair in JL last week, I sat in it for a good while, it wasn't perfect bliss but much more comfortable than the one I've got. Nearly 900 quid though. Don't know if it woudl be a good investment or not
£900 is a good investment if you can move more. I must have spent that in cake sitting around feeling sorry for myself because my bits don't work. Looking like a rucksack under the coat though??? Don't go on any train is all I can say.
😆😆😆 I need to learn how to work eBay and see if there's a second hand one going. If I knew for sure it'd help I'd buy it but hard to tell when it's still painful to sit. It's called Humanscale Liberty Office chair. A mate who works for the NHS got one issued during lock-down when they were all working from home, she loves it. Guess the NHS didn't want anyone sueing them from getting a bad back s;umped over a laptop.
I got one 20 years ago from DWP as I was working with them as a Placement Officer getting people back to work who were long term unemployed through disability. Wasn't that particular one but it did the trick.
I really hope this helps you to lead a better life, I have followed your issues, which have been truly dreadful. When you say your fractures are unfixable, is that because you aren't a candidate for anything? My family has a history of osteoporosis so I've always been tuned in to a certain extent, but my mother had some kind of cement in her spine about 20 years ago as she had extremely poor bone health and had fractures in her spine.
you have a good attitude towards is all. Here's hoping for you
Thank you. I'm told the cement options aren't appropriate for me, I think they are only if maybe you're younger and only broken one bone and if the fracture is very recent, it took nearly a year to get diagnosed so too late.
So sorry to hear you're experiencing these awful problems TC. Many many thanks for the warning. I raled against consultants advice for a couple of years after DEXA showed Osteopenia in 2020 when I first started on Pred. I tried Alendronic and Risedronate but both gave me nausea. A second DEXA in Feb2023 showed worsening result pushing me into Osteoporosis category. Since then I have seen a specialist and reluctanctly started on Zoledronic Acid Infusions. I think the published possible side effects of the medication are rather frightening. However, your experience has helped me to understand the possible consequence of not taking medication now. Thankfully, I have now been able to stop Prednisolone so I'm hoping that will help reduce my risk.
Why are you reluctant can I ask? I haven't really read up on the Zoledronic so don't know anything about it but it seems better than the Prolia option, There is also a new drug out recently or soon called Abaloparatide which seems to be getting good reviews from people like the ROS. I will read up on it at some point because the idea is that I go on to Zoledronic after one year on Romo. The risks are high for post-menopausal women anyway, steroids are just another risk factor thrown in to the mix
I think my main fear was the possible side effects of Zoledronic( mainly necrosis of the jaw). I've had a couple of root canal treatments and quite a lot of other dental work. The thought of potential problems with healing if I need any further dental work scares me. However weighing up the pros and cons I decided to accept the infusions.
So sorry you’ve had such an awful time 😟The brace looks a great idea and if it helps your pain and improves mobility, that’s great! Thank you so much for sharing the info and for courageously thinking of others and encouraging us to look after ourselves!
Thank you tangocharlie - I had wondered about back braces and will deffo look into it. I’ve been taking regular studio Pilates sessions under guidance of a physio which helps but walking any distance is a problem and shopping is absolutely out!
I’ve been on pred since 2018 and thankfully am now down to 1.5/1, very very slowly having had a bad flare last time I got this low!
It is indeed so important to look after our bones. I had a couple of vertebral fragility fractures way back in my late 60’s (78 now) and have taken biphosphonates for years. Absolute fooled by regular Dexa scans indicating I was only osteopaenic. However I was shocked to recently discover I now have 8 spinal fragility fractures. It’s a bit of a mystery isn’t it. Have just started Romosozumab too.
A founder member of the charity's aunt had a similar story - 8 years of bisphosphonates and suddenly a load of spinal compression fractures. Her doctor said the same. Like TC, I also had very satisfactory dexascan results and then last year they found a possible compression fracture on an x-ray. Never had bisphosphonates.
Makes me wonder just how useful Dexa scans really are. How accurate are they and are there other tests that would also be useful. When I have a mo I’ll dig around to see what more I can find out. Steroid use hasn’t helped either. I just wish I’d been more aware of bone health and implications many years ago. I’ve always been so robust & healthy - able to walk miles & miles & garden all day long - not now😂
They aren't an absolute science - none of it is. The reading can vary from machine to machine and operator to operator even on the same machine. Position is crucial. And there is no consensus on whether bone density is a true measure of risk - they just plucked a level out of thin air to define osteoporosis. And the manufacturers of Fosamax coined it all the way to the bank.
I had had horrendous back pain due to muscle spasms for about 2 years but I had had it before, years ago. The first x-ray found nothing - though I think I will get him to look at it again. Then last year, possible compression fracture seen so a bisphosphonate infusion insisted on and since then the pain. already somewhat better, has improved steadily. Is this all coincidence?
I suspected that all these tests and measures can’t be an accurate measure, but it’s all we seem to have at the moment. The pain of these vertebral fractures can be horrendous but they do heal in time and the pain decreases. Years ago I had a Dexa scan and was sent to a Gynaecologist for the results - not good, and he berated me for coming off HRT and going onto Fosamax which he considered to be cheap rubbish!! Of course those of us older ones were taken off HRT due to then-health scares. Shame really.
I haven't studied all the details , but am aware some of the drugs cause a rebound effect. I started reading up but then got offered the Romo and it seemed a good option. When I went through the BRAN analysis, the Benefits seemed good talking to various people, the Risks - long term we don't know as it's quite new and short term side effects seemed not worht worrying about. The Alternatives- well some ohtes might hae done the bill eg Zoedronic but not the ones by mouth or Prolia and the The Do Nothing option wasn't really an option given what's happened and could happen again. Also I figured the longer I waited without doing something the more likelihood of breaking more and also my life was on hold because of that.You can ony make the best decision at the time based on the information you have can't you.
That's shocking. I think the Romo is helping the pain, how are you finding it? I'm also asking whether something else could have caused the fractures so having blood tests to rule out things like ankelosing spondylitis I think, and myeloma, have you had them? It's still a mysery why the DEXA scans were fine yet this happeneied, although the nures on the ROS helplie say they hear this often and so many spinal fractures go undetected which means women don't get the treatment they deserve
They're trying. I'm really impressed with the way they're going, they have a new young dynamic Chief Exec, recently won Charity of the Year, have invested in a nurses Helpline, have Camilla (I refuse to call her the Queen) as a Patron, have members paying a monthly fee , a strong regional network etc etc. PMRGCAuk should watch and learn from them
I’m getting along fine with the Romosozumab injections. I don’t think it’s helped with the pain particularly, but my fractures have settled anyway and aren’t so painful (ie no spasms). I spend lots of money on Studio Pilates sessions with a very good physiotherapist and that helps keep me on the road. Hoping and praying that this Romo means I don’t ever have any more fractures. And hoping too that I can finally stop taking prednisolone and be free of PMRGCA. I’m on Romo for just one year - I’m not being monitored at all tho, so think I need to check that out and potentially ask for more tests as I do wonder why this has happened.
Glad to hear. I'm still in a lot of pain and from what I've read and speaking to the ROS nurses that although the fractures themselves heal, for some people the pain stays chronic for a long time or sadly for some for ever. So I'm just trying to get marginal gains at the moment. I'm sure I've had less pain since having the first Romo injections last week and PMR Pro posted a link to a paper that says it can have an analgesic effect
Oh dear this is all a bit of a wake up call 😳I have lost about 3-4 inches in height over the last 10-15 years, despite being on denosumab injections for 10 years. Is that a better indication of osteoporosis than a dexascan showing osteopenia in the hip???
What an excellent summary that is. My mother and grandmother lost a lot of height too so I think it may be in my genes! Having read the link I think the best way I can try to help myself is, as ever, to lose weight 🥹I barely eat really but there’s always room for improvement! Otherwise I do pretty much everything they recommend….
That's what I kept saying. The stupid b@stards are gong to pay for their incompetence and hopefully learn from it, though the latter is doubtful and probably so is the former but I'm drafting my official complaints anyway as that's what you need to do first and see how they respond
I lost 3 inches height in a year. Again, this should have been a clue to the physiotherapists along with the excruciating pain, back spasms, inability to lie down on my front or back and rapid weight loss. Everybody, two GPs, advanced nurse practitioner, 3 physiotherapists, and rheumatologist were so blinkered and relied on their pre-conceived ideas and biases rather than on doing tests and getting scientific evidence.
My very limited understanding is that you can only be on Denosumab for so long and there may be a rebound effect when you stop. I'd discuss the newer options with your doctors
No, the option is to take denosumab and remain on it continuously or to discontinue it but switch to a traditional bisphosphonate. There is documentation showing it is safe for at least 10 years. It is a different situation for patients with severe renal disease.
There's such a wide range of options I wonder how they decide what's best? At a round-table meet-up of ROS members last week just about everybody was on something different, ranging from AS to Romo. Denosumab was never on the options for me and I'm glad as I didn't like the sound of it - ike you say, if you stop, things rebound
Only if it is done incorrectly - its purpose is to build density quickly and then you maintain the new level with more traditional bone protection. You will probably still switch to something else at the end of the year of romo to stabilise the BMD gains. They are still playing with it - they don't know the optimum strategy as yet.
Yes I'm told I will probably go on to Zoledronic infusions after the year of Romo. My question to them which is still unanswered is how will we know if the Romo has worked? They can't say your DEXA will have improved as it was OK to begin with. It's an act of faith then. It's a relatively new drug so not much is known about yet apart from the data from trials, and who knows whether that is reliable? It seems to be my best option atm though.
Exactly- I’ve been on denosumab for nearly 11 years now as other meds were unsuccessful. I was reviewed last year by a bone consultant who decided I should continue with it….
Hi, I’m in Australia and am sorry to hear of your predicament. Firstly…..any back brace is better than none but the wrong ones can be worn too. My back Dr recommended one for me that wasn’t ideal. $800 later its in the cupboard!! How long do you have to wear yours for?
I suffered my first massive fracture 2 yrs ago, 70% fracture. After a stay in hospital came reasonably good. Then I fell out of bed 3 mths later and another fracture, recovered to a manageable state. In may this year my bones in lower back crumbled to bits and I’ve been in hospital for 4 mths.
Now home wearing a massive brace 24/7!!!
I’ve lost all my independence as am unable to bend, shower unaided, cook, drive etc. I wish I hadve started medication yrs ago and I also urge others to look after their bones.
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Please does anyone know a private Rheumatologist in Cornwall or Devon who I would be able to go and discuss my osteoporosis with? Thank you.
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