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 ..
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 🤞
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. 👍
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.
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.
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!
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?
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!
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.
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