Wondered if anyone might be able to suggest effective treatments following a spinal fracture.
I was diagnosed with osteoporosis (spine) in 2007 and it was severe. I took HRT - Tibolone 2.5 mg and a further dexa scan 18 months later showed a 7% increase in bone density. I was told this would continue to increase if I stayed on Tibolone. I have always done a lot of walking (10 miles/day for decades), dancing (hours every week), gym, swimming until recently when I moved and was working from home and could not find a decent gym. So much for exercise helping! There was no follow up and I had no symptoms. I have had scoliosis since I was a child.
Anyway, I woke up one morning in January and could not hoist myself up to get out of bed. Managed after an hour. I had locked facet joints and a spinal fracture at T12 (waist area). Apparently, the fracture caused the locked facet joints which an osteopath unlocked and then I could move and go to bed.
I have been advised to get early treatment in the form of spinal injections because I will almost certainly get another spinal fracture within 12 months, and another, and another.
The burning question is what drug would be the best to inject. I am aware that there are budgeting issues and there are restrictions but this is surprising because I remember 20 years ago that the Osteoporosis Society took the government to the European Court because it was not willing to prescribe anything other than alendrate which many people cannot tolerate. I was referred by the GP for a dexa scan last month but the hospital refused this on the grounds of my age 76. I tried alendrate (a tablet taken first thing) in 2007and it was unbearable - dreadful heartburn. I found the Tibolone fine but it clearly is not enough now. I was offered no treatment for the fracture or locked facet joints even though I could not move.
Any suggestions regarding possible treatment for osteoporosis would be very welcome. I can see though that many people on here have similar difficulties and are equally struggling.
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DelicateInput
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I cannot think that is right. As far as I know you have to be over 65 to get an NHS DEXA scan. I think you need to challenge this. Also as I am always saying push the GP to refer you to a rheumatologist. They may recommend infusion or injections which don’t cause the gastric problems that tablets do. My last DEXA scan was private and cost £195.
I had a DEXA scan in north Surrey when I was 45, to check whether I still needed to take HRT after a very early menopause. All was fine, so the HRT was discontinued.
That was a long time ago. Bone density decreases with age. After a fracture a DEXA scan seems to be the normal procedure. You need a rheumatologist to tell you what the best treatment is.
Thanks - it was refused on the grounds of age (76) despite having a fracture of the T12 vertebrae and no treatment has to date been offered for anything. I have an appt with the GP next Friday. Would you happen to know whether an MRI scan would show bone density - it seems to be the same price privately as a Dexa scan?
"Solid-state MRI of cortical bone was able to help detect potential impairments in parameters reflecting porosity, morphologic structure, and mineralization in postmenopausal osteoporosis."
I'm sorry you're having these problems, you've been very fit, it seems that if you're prone to Osteoporosis nothing you can do stops it!!!!MRI doesn't show bone density but would show any other fractures and if your T12 has healed.
The least you should be on is calseos or something similar which is vit D and calcium
The Dr has a duty of care which it doesn't sound like you're getting, you could ask to see another Dr if you don't get anywhere with your present one. I'm 14 years younger than you and have had OP for 5 years, haven't had a pain free day in all that time, unfortunately it seems once you've fractured others follow, I've 7 so far, the last 2 will not heal and there's little they can do.
Thanks, that's very helpful. My concern is that I have had juvenile scoliosis of the upper spine (curved spine) since age 10, and it has been hard work trying to disguise it and treat it at the osteopath. I was always very lightweight until recent years/lockdown. I struggled to keep my weight up to 7.5 stone in my 20s/30s and after that gradually put some on. Osteopath told me I should be max of 8.5 stone because my back can't carry weight above that. It gives an unflattering shape - pot belly/short-waist which is compressed, stooped posture and I can clearly see that the fracture at the waist has exacerbated this and I don't want any more fractures.
The scoliosis makes the muscles tight which gives an even worse stooped appearance and it also affects my breathing. The osteopath stretches the muscles and makes me an inch taller at almost 5'4"and my breathing is 30% easier - lasts about 3 months.
The x-ray report said there was some degeneration (osteoarthritis) in the spine but it was not significant so I think a dexa scan would show the bone density clearly and it would be useful for monitoring any treatment - once I get it! I am amazed at not being offered any treatment for the fracture or the osteoporosis - just a text from the GP saying to make an appt if I want to discuss the refusal of the dexa scan. In particular, the osteopath said he had unlocked several facet joints on the right (which locked when the T12 vertebra collapse) but there is still one on the left. I would like a scan to ascertain if the pain I still have is the locked facet joint or the fracture.
This is awful how you are being treated. You need to see a osteoporosis nurse at a hospital minium that's what I did and I also have a T12 fracture since 2023 which is progressively worse today I have been put on Teriparatide daily injection to try and help I also take vitamin d3 and calcium through diet. I to have had scoliosis since birth as well as kyphosis of the chest. Pain so.days is crazy but when referred to physio I was told osteoporosis is not painful and my reply was it is when you have fracture and scoliosis as well as arthritis on top. The exercises they suggested was twisting at waist as well as bending I had to refuse and they said it would do no harm as long as I was careful hence I stopped going.This is an awful disease and as many are der I just think they do not care sadly
Many thanks for your reply. I have made a note of Teriparatide - I am aware that NICE restricts some drugs until they come off patent or become cheap enough. I could not get them in 2007, just alendrate.
An osteopath and a chiropracter told me scoliosis is caused by one leg being shorter than the other. I have one 0.5 cm shorter than the other. During growth at around age 8 to 10, children walk leaning to one side, causing the spine to twist, and this can be corrected by having a built up shoe on the shorter leg. It is worse for girls because having a bust puts added weight on to the spine causing it to twist further.
I agree that people in the NHS are just not interested - I have had a few problems which are really really easy to treat but they just follow the standard text book and never wonder why patients are not cured.
I believe that teriparatide has now come off patent- I had one month of Terrosa, which then went out of supply. After a couple of weeks, was put on to a Teva version, which (along with some other new-to-market versions)) is described as a “biosimilar” , and I’ve been told is much cheaper for NHS. Packaging and applicator are slightly less stylish (but also slightly easier to use) and nurse tells me the teriparatide content is identical. Age should have nothing to do with it - I’ll be 80 in a few months’ time, and am getting plenty of medical input.
I’d say now is the time to really push for treatment by a consultant rheumatologist - your GP is definitely not an expert in this field and, sadly, sounds fairly rubbish
They keep rabbiting on that Osteoporosis isn't painful, I wouldn't wish it on anyone!!!!I've been in pain from fractures and needing strong painkillers for 5 years.
The physios at RUH Bath wouldn't let me do any exercises and gave me hydro therapy instead as it was safer, I'd recommend it if you can.
Never twist, I fractured 2 new ones and refractured one I'd done before just by turning round. You were right to refuse!
Sounds like you need to lay it on thick and heavy to the Dr, if you don't tell them they don't know, last time I saw the Dr I was so desperate I started to cry, I was so embarrassed, didn't expect it to happen 🤷🏽
I think they do care but they haven't the millions of pounds of funds to try and find a cure, whereas cancer kills so the money get used for that, I'm not saying it's wrong as cancer is awful, but then so is Osteoporosis.
Delicateinput, a dexa wouldn't yield accurate information. You need an MRI with attendance to Vertebral Bone Mineralization. When (if) you speak with the ROS nurse ask how you can secure that type of scan.
My opinion is that with the fracture, you should be prescribed an anabolic osteoporosis medication either Forteo or Tymlos.
I like your osteopath. It might take a minimally invasive surgery to unlock the other facet. Those fractures can be sooo painful. The anabolic medications speed healing and relieve pain.
Thanks - this info is really helpful, and I have made a note of the information.
The osteopath just gave one punch on my spine and there was an almighty crack which could be heard in the next room, and it made me scream. I could than lift myself up off the bed in his surgery. I had been unable to go to bed for two weeks because I could not get up. The pain was 90% relieved then but still quite bad. He wanted to continue but I could not stand the pain and got a bit afraid.
I had a similar incident with my neck in October. I woke up one day screaming at the slightest movement. I went to the osteopath and again he unlocked the facet joints. The left was then completely flexible but I had to return for him to do the facet joints on the right. Although it hurt both times, it did not make me scream like the punch on the back.
My Chiropractor won't touch me anymore he said much as he'd like to help the risk of me fracturing is too high, which is a pity as he's very good but I do understand what he means.
Hi DelicateInput et al! Just hoisted myself up from reclining chair after another almost sleepless night. I can't lie down because of the intensifying and spreading pain in my spine, but if I do, getting upright is a slow and painful business. Pain relief such as dihydrocodeine plus paracetamol plus voltarol provides slight but short-lived relief, tramadol doesn't work and causes nausea. Getting a diagnosis is slow. Rheumy says pain not due to GCA/PMR/Fibro; GP's physio says Xray showed only borderline compression fracture to L4 & suggested PMR flare as the cause. STILL awaiting dexascan (supposedly requested January). Now been referred to bone specialist - I don't anticipate speedy appointment. Beginning to think osteopath might be the way forward, but terrified of further damage being done, especially without any conclusive diagnosis. So this exchange on the forum is of great value to me - thanks for input, everyone.
The only treatment I have heard of is kyphoplasty where cement is injected into the fracture vertebra. Apart from that, I think the fractures are left to heal. I went to see a spinal surgeon and he said he would only do it where there was continued and ongoing severe pain. As my fractures were healing and the pain reducing, I wasn't a candidate.
I've also heard that you can get further fractures after this procedure as you have weaker vertebrae above and below the treated one.
Thanks for the info. I am going to press on and try to get an appt with a rheumatologist and see what they offer. It sounds to me as if the cement injection is a last resort in severe cases.
When u see the GP to discuss, put yr phone on the desk and say you would like to record the discussion to play back later so that you can fully understand the position.
The nice thing about the bone cement is that it partially restores and preserves the height of the vertebral body and hence the height of the patient, but also the facet space where the nerves exit.
Not all fractures are suitable unfortunately, the way mine are broken the risk of the cement leaking into the spinal cord was too high so they couldn't do it. They're now suggesting Radiofrequency Ablation, I did ask on here if anyone has had it but only one person replied that she was waiting for it, so I don't know if it's a new treatment they're offering.
Oh dear I dont know where to start with so many of you receiving different answers to Osteoporosis.I'm nearly 81 and was diagnosed about 10 years ago. I have received various drugs over the years to help my spine but hasnt really helped so now about to start Teraparatide injections each day for a year then another DEXA scan. I have lost 5 inches in height so know the problems that brings! I have had two spinal fractures which both have been repaired with bone cement. My local hospital sends anyone over 40 years for a DEXA if they have fractured any bone. Brilliant.
I have about 2/3rds of my spine beings held up with rods plates and screws. I can't twist of bend and my walking now is almost nil when outside the house.
As regards pain, yes Osteoporosis is very painful so dont let anyone tell you otherwise! I have tried various pain relief over the years on and off prescription but none really help so just take Paracetamol and Nurofen each day which I think just takes a small edge off the pain.
I cant complain as I have lead a great and interesting life having been a bit of an Adrenalin junkie from being a little girl!! I have supern memories to look back on and at my age one expects that life will not be as simple as when you were younger.
Think positive, get on with the life you have and be thankful for what you have. Yes of course some days I feel very down about what life has thrown at me but get up from my chair and do something to take your mind off the pain....my husband and I are fanatical about Jigsaws.
Take care and best of luck to those of you who are not getting the support you need
My understanding is that a Dexa scan is less accurate if you have scoliosis. After falling and breaking my shoulder I had a Dexa scan and then paid privately for a Rems scan. Both showed osteoporosis however the Rems scan also calculates the actual strength of the bone which the Dexa doesn't - Dexa only measures density of the inside part of the bone. The Rems scan also can adjust for scoliosis and is therefore more accurate. I am very glad I paid for a Rems scan- I had an hour's appointment and went away feeling I had a plan in place and control put back into my hands rather than left on a medication pathway that has deeply unpleasant side effects. And in my case the Rems scan showed that my bones were actually strong- the osteoporosis diagnosis was because I'm petite and typically petite women have less bone density.
Thanks - I will look into this. My problem is, I think, the reduced and lack of exercise since lockdown/working from home/moving home where there are no suitable gyms. OP was diagnosed in 2007 and I just took Tibolone (HRT) and never had any pain though I am stooped from the scoliosis. It was a complete shock to wake up and be unable to get out of a bed and unbelievably that you can break a vertebra in bed, never having had a broken bone before. I was petite but not since lockdown! I have always been lightboned. Many thanks.
Osteoscan Ltd in Crawley is the nearest to me for a Rems scan and it is £275 which I thought was a good price. I was about to book it but I notice on the Royal Osteoporosis website that it is not regarded as being proven (by the NHS). I am wondering therefore if I present the scan results to the NHS whether they will provide me with any treatment for the osteoporosis. I have a feeling that if a see a consultant privately, the NHS will not accept the recommendations for treatment. I have had this palaver with the NHS previously in relation to other conditions.
The consultant that performs the Rems scan Nick Birch is also a retired spinal surgeon so will be able to give you qualified advice - I found his consult incredibly helpful and came away with a detailed report, exercise and nutrition plan.Your GP may choose to take on board the report and prescribe if it's needed, or refer you onwards or choose to ignore it - but you will have this information and that can only be helpful. I think that knowledge gives you more power and a louder voice .
Thanks. I will go ahead. I am seeing the GP on Friday and will tell him to include the scan results in the referral letter. I will leave it open as to which rheumatologist at the local NHS hospital. If it is slow, I may see one of them privately but at least the NHS referral will be in place so I can get the treatment on the NHS. Some drugs have come off patent and will be cheap for the NHS to prescribe. The issue in trying to get treatment at a private hospital is not the cost of the drugs but they seem to charge around £1,200 just for one injection of anything.
I had my cataracts removed and triple lens implanted. The surgeon got hardly any of the £8,000 charge. Around £1,400 was for the triple lens and about £400/eye for inserting the lens. The rest went to the hospital who paid the surgeon out of the fee but the fee was not much. The hospital charged thousands for 20 minute use of the theatre, and to sit in a room for a couple of hours, and no nursing care. I was covered by BUPA at the time but would have had to pay because again the NHS refused me treatment even though my sight was dreadful and far far worse than most people having cataract surgery. I am guessing the op was too difficult for them - I had numerous eye defects since the age of two.
I hope everything works out well for you and you get the treatment you need. It's really tricky navigating your way around the Private Health care & NHS system and trying to figure out what is in your best interests versus income generation for the private system and cost saving for the NHS. Every best wish for the right outcome for you.
I got osteoporosis at 59, been on allendronic acid since, I’ve had a few broken ribs through falls and recently had thoracic area X-ray looking for fractures but haven’t got results yet from rheumatologist.
My last spinal fracture was February 2023 (T12) and I am now on six-monthly Denosumab injections. I have managed to get through 12 months with no new fractures (fingers crossed), though my sacro iliac joint gives me some twinges.
The worst time for me, as it is for many, is first thing in the morning. I was also referred to a physiotherapist who set me up with exercise classes (gentle) twice a week, so I have (finally) been very lucky. Yesterday I made a start washing my car and now I'm suffering. Thursday a carer at my partner's care home ordered me to do up his shirt buttons. I had just arrived, on two sticks, and I was amazed that he could be so blind as to be unaware that it might put me at risk. I don't do that kind of bending down at home, and I already have seven compression fractures and something going on in my neck.
I suppose there are few conditions that are visible, but there are signs, like using sticks, walking with a bent back, plus I am 80. I have no carers.
I think we have to ask about injections. If you don't ask, you definitely won't get.
Ooh, I never thought of that! Too late now. I was just annoyed that they are supposed to help him dress in the morning, and he had his shirt open sll the way when I arrived at tea time. But I will certainly bear it in mind should anything like that happen again. Thank you.
Your treatment is heartbreaking to read ... if you have moderate scoliosis then Dexa will struggle. If you can afford you can opt for a REMS scan ... Osteoscan run by a spinal consultant can do privately and give you some support. If you can get an anabolic or evenity that would be great if not an infusion as suggested by others.
I've 10 vertebral fractures. I receive a Zoledronic Acid Infusion annually. Never a day without pain. I initially had vertebroplasties at L1 L2 which caused the vertebrae on either side to collapse. I also have PMR and fibromyalgia. On prednisone for the pmr which caused the osteoporosis. In the process of tapering, but also currently flaring...I think. Or possibly another fracture. I may also have an atypical femoral fracture and waiting for a full bone scan on that. Today was an extremely painful one. I do sleep quite well. Thank the gods.
Were you also being treated for fibromyalgia or rheumatoid arthritis as well? I think the treatments are the same and prednisone is prescribed for both. I was diagnosed with RA in 2014 but it was a temporary episode. Symptoms cleared up a year later and I did not feel the need for drug treatment. I did not trust it either, especially prednisone. I used to keep active and I think that can keep symptoms at bay but maybe not for advanced and established cases. Mine came on overnight but had almost gone a year later and I have hardly had any symptoms since. Just lucky though it runs in the family and always followed the same temporary pattern. OP does not run in the family though - they all have the bones of a nag horse and are always falling over, landing heavily, but never break a bone. I never fall over. Ironic that I broke a bone in bed.
No pred for fibro and I do not have RA. I have PMR and osteoporosis. Fibro meds I cannot take as they do not help the pain and turn me into a suicidal zombie. Your bones will break if you look at them the wrong way. None of this runs in my family, but PMR did start immediately after the first Covid vax in 2021 and escalated after the second one. Pred gave me my life back, but also caused the osteoporosis. It's a damned if you do or not situation. All the best in getting yourself sorted. ⚘️
Prof BelindaBeck of Griffith university has a programme called Onero. It involves attending gym twice a week for at least half hour & performing weight lifting exercises supervised by a physiotherapist. No side effects. You can take whatever drugs you are prescribed.
I think weight lifing does prevent osteoporosis. I went to the gym for decades until I moved house in Sep 2021. I attended a local gym for 12 months until Xmas 23. I think this possibly staved off the osteoporosis. Many thanks for this.
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Advice on treatment for osteoporosis.
Should I be concerned that many of my joints have recently started clicking/popping?
-2.5 femoral neck and the Endocronoligist wants me to start a biophosphate.
