Six months ago, I believed that I was reasonably fit and healthy for a 69 year old. I've always kept active - dancing and walking - and have never smoked. I actually LIKE healthy food and drinking water! I was sent for a Dexa Scan because I noticed my finger joints were swelling and painful after a few hours gardening during Lockdown. I'd actually forgotten about it because there was an 18 month waiting list.
I was called in to see my GP earlier on this year and he told me that I have severe osteoporosis in my spine. -4 on the scan. His words were "This is what's going to happen; your discs will gradually collapse one by one and you will be in agony each time. You will lose some inches in height." Then he prescribed Alendronic Acid tablets - one a week - which he explained would at least stop my bones losing any more density.
That was on a Friday afternoon and I spent the weekend in a total state of shock; no longer daring to do any gardening or exercise! Luckily, the Osteoporosis Helpline answered some of my questions.
Four months on and I couldn't stand any more side effects. My hair has thinned and I have developed Lichen Sclerosis. My throat and stomach were sore all the time as if I had swallowed a load of sea water! A mug of tea made me feel as if I'd eaten a three course meal! I've been so careful taking these tablets exactly as instructed. My GP has now prescribed Ibandronic Acid 150 mg once a month as he thinks these will be more gentle on my stomach. When I had a telephone conversation with another GP, she expressed surprise that I hadn't been given Lansoprazole 30 mg tablets to protect my stomach in the first place. I stopped taking Alendronic Acid four weeks ago, and my stomach has finally begun to feel OK again. I haven't dared start taking the Ibandronic tablets nor have I taken the Lansoprazole as it looks as if you have to take those all the time.
I would really welcome any comments from anyone who has experienced - and, hopefully, overcome problems with Alendronic Acid tablets. Have Ibandronic tablets been any better? How successful have Lansoprazole tablets been if you have suffered with stomach problems? I am very nervous about going down the route of taking drugs and more drugs to try and cure all the side effects from the first lot of drugs!!
Any advice greatly appreciated. Many thanks!
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As far as medication is concerned, everybody reacts differently, so it's not possible to know whether another bisphosphonate (same class of medication as AA) will suit you better. Some people find it does, others find it doesn't. However, I wonder whether your bone health is as bad as you've been led to believe. My worst score from a DEXA scan was -3.6 for my spine, but my hip score from the same scan was only -2.5, so only on the cusp of osteoporosis. 15 months later I had a REMS scan, which gave -2.6 for both sites, and is far more likely to be correct as REMS is more reliable than DEXA. Do you know what your hip score is? If there's a difference of more than 1.0 between your scores, there's a very high chance that an error was made with one or both scores. Osteoporosis is systemic, meaning that bone loss usually occurs at a very similar rate throughout the body.
I'm actually quite puzzled why you were sent for a DEXA scan when you reported painful, swollen finger joints, as that doesn't sound like a symptom of osteoporosis . It's far more likely to be some form of arthritis. I'm also appalled that the doctor used fear tactics to persuade you to take medication, although this isn't unusual. I've read recently that doctors are being told NOT to use such an approach when giving a diagnosis to a patient, yet the practice continues. As far as your risk of fracture is concerned, you should have been given a FRAX fracture risk score (eg 10% risk of fracture in the next 10 years), which should be based on your hip score and gives a much better indication of the likelihood of fracture. It's worth remembering that a 10% risk of fracture means a 90% chance that you won't fracture. Taking a bisphosphonate like AA or ibandronate will only reduce that fracture risk by 50% (so 10% fracture risk becomes 5%), meaning that 50% of people who would have fractured without meds will still fracture when taking the meds. There's a really helpful NICE patient decision aid here, which explains all this: nice.org.uk/guidance/ta464/...
Great reply. The knee jerk reaction to prescribe the drugs without any investigation or research seems prevalent in the medical world. Discs collapse without any osteoporosis diagnosis. Bones can’t differ much across the body as they are your bones.
I wonder at the popularity of urging people to take the drugs. Some I’ve talked to have not researched them just accepted that they are required and safe.
Thank you! My husband was a pharmacist, so I am too well aware of the eagerness of some GPs to prescribe drugs. I'm also very aware of all the side effects. I've never had to take any medication until now!
Thank you very much for your reply. You actually seem to know far more than my GP, who does a good impression of Doc Martin most of the time! I haven't visited him for years and haven't needed to take any medication of any kind, so the osteoporosis diagnosis has been a terrible shock to me.
I think the scan was ordered because they asked me if I'd ever broken my fingers or wrist and I mentioned breaking my wrist eight years ago when I tripped in the garden. I wasn't too worried myself at the time about my bone strength as the rock my wrist hit also broke! It healed completely and hasn't stopped me playing the piano.
I've tried to make sense of the scan. It says L1 to L4 is T score -4 and Z score is -2.4. Neck is -2.5 and Z score -1.0 . 10 year probability of fracture reads 22.5%. My GP said my hips "are not too bad." I can't see where he gets that information from.
Did you pay privately for a REMS scan? I've never heard of this one.
I went back and told my GP that he was really brutal during that consultation, especially when he knew my husband passed away suddenly just before last Christmas and I've had more than enough to deal with without more bad news about my own health! He said that he likes to be honest and direct with his patients. Also that it was a Friday afternoon and he might have lacked some judgement!
Thank you again for your reply. I must make time for reading and studying more about Osteoporosis!
Neck refers to your Femoral Neck, which is your hip score. At -2.5 it's on the cusp of osteoporosis. However, your -1.0 z-score means you are 1 standard deviation below the average score, which is not that bad. Around 16% (1 in 6) of people will have a z-score of -1.0 or lower.
Refer to Met00's post above regarding discordance between the spine and hip. I would definitely recommend getting a REMS scan to see if your spine is really that much worse than your hip.
I love your description of the rock breaking as well as your wrist! I'm so sorry to hear about your husband, and well done for letting your doctor know how insensitive he was! Wrist fractures become more common as we age, but that doesn't necessarily mean that our bone condition is of concern. It's normal to lose about 1% bone density per year from around age 40, with that increasing to 2% per year or more for about 5 years around the menopause. So on that basis, I would expect most women according to a DEXA scan, to have osteopenia by age 60 and very many to have osteoporosis by age 70. That doesn't mean we're all going to have collapsing spines or major hip fractures and end up in a wheelchair or worse (which is what my GP told me!).
Your t-scores are what they use to decide whether or not you have osteoporosis, comparing your bone density to an average 30 year old, while your z-scores compare your bone density to average for your age. Your neck of femur z-score is within the normal bone density range for your age (anything down to -2.0) and your t-score is only on the cusp of osteoporosis. Your FRAX score is quite poor, but I wonder whether they've used your spine t-score (should have used neck of femur) and included your wrist fracture. If you don't believe that was a fragility fracture (minimum or no impact, whereas yours was such high impact that the rock broke too!) then you could challenge this. You can check out your own FRAX score here: frax.shef.ac.uk/FRAX/tool.a.... Make sure the Union Jack is displayed on the top right, if not, go to Calculation Tool near the top, and select Europe/UK from the drop-down list. in the box that says "Select BMD" there's a drop-down list that allows you to change this to t-score. You can put your neck-of-femur score in there.
I received this info from Save Our Bones today, which provides a couple of really simple tests you can do at home to check whether you're at high risk of fracture. I imagine this works because falling is the main reason for fracturing, so being strong and mobile with a good sense of balance will go a long way towards preventing fractures: saveourbones.com/reduce-you...
Yes, REMS scans are only available privately. They cost £200, but many of us believe they're worth every penny because they're so much more reliable than DEXA scans. They also give a score for bone strength, which you'll have gathered isn't necessarily the same as bone density. That's why so many people with fragility fractures only have osteopenia, while others with very poor t-scores never fracture. There are two places that do REMS scans at the moment, one is a physiotherapy clinic in Amersham (profortis.co.uk/bone-health) , the other is an orthopaedic consultant based in Daventry but with clinics around England and occasionally in Edinburgh (osteoscanuk.com/). Profortis is cheaper if you don't want the follow-up consultation, but is with a physiotherapist rather than an orthopaedic spinal expert. People who've had it there have been impressed with the physiotherapist's knowledge. Osteoscan includes the consultation (with Dr Nick Birch - you can google him) as part of the price and I know of a lot of people who've seen Nick and been very impressed (so not just my say-so). REMS scans originated in Italy and are now accepted for diagnosis of osteoporosis there and also in the USA. Here in the UK, as usual the NHS is very slow to accept new technology, so at the moment simply seems to be saying it's interesting and could potentially be a future alternative to DEXA . That means results from a REMS scan may or may not be accepted by your doctor. The first time I had a REMS scan, Nick gave me a lot of information about it, which I was able to send to my GP. However, my GP has never got back to me about my results, so I suspect doesn't really know what to think!
I hope I haven't bombarded you with too much information! It's taken me years to get my head round all this, whereas doctors only have very limited training in osteoporosis and it isn't on their list of conditions that they have targets for, so there's no incentive for them to specialise in it. Good luck with your learning!
It's brilliant to be given all this information! Thank you so much. I will definitely see about organising a REMS scan with Dr. Birch as I don't live too far from Daventry. However, I've just had a blood test done at the surgery, so will wait to see if anything interesting comes from that. The 'neck of femur' (oh dear, silly me, I really wasn't sure whether that meant my neck or not!!) has another score on the other side which isn't so good - a -2.8 and 1.5. Having gone back to the scan report, I can see that it states Fracture of Hip Possibility 6.2 % and 'Major Osteoporotic Fracture' is 22.5%. Back to my studying.....
That's a very common misunderstanding to think it's your neck rather than neck of femur. I've often come across people confused about it!
If you're not far from Daventry, you might be interested in the Northants Osteoporosis Support Group (affiliated to the Royal Osteoporosis Society), which I help run. We meet most months in Northampton, speaker meetings roughly quarterly, in between an informal cuppa and chat at Dobbies, or occasionally an informal online Zoom meeting. If you want to know more, you can get in touch via northamptonvolunteers@theros.org.uk. Our next meeting is on Monday 9th Jan, 2.00pm at Dobbies.
Thank you for the info. Yes, I may well be interested in the Support Group. You all sound very knowledgeable and positive! I will check out the details you have given. I'm hoping the Dobbies you mention is the one at Harlestone Heath as I call in there quite often! My line dance classes are on Mondays, but I can easily miss a class every month or so. Sadly, not the first one back, though, on the 9th, as we agreed to show support after our enforced rest during the festive season!
Sorry, it's Dobbies at Wootton. If you contact the group email, I'll let you have the dates for the rest of the year. Where do you go line dancing? It's something I keep wondering about!
Went to a brilliant line group for over 20 years in Market Harborough until Lockdown when the teacher decided to retire! I now go to a small friendly group in Kibworth; a U3A one. You'd be very welcome if it's not too far away from you.
I am in a bad way with back pain, I recently got a imaging report from my dexa scan, which said, the lowest t score lies in the osteoporotic range (-2.5)the lowest t score is-4.1measured in the lumbar spine. the bmd (g/cm2) at the femoral neck is 0.593.we understand the patient will has not suffered a previous known insufficiency fracture, however vfa shows superior end-plate deformity at t12 suspicious for an insufficiency fracture, do you understand that I think now I have suffered a fracture because of my back pain, I have an appointment with endocrinologist on the 7th Feb,but what can I do in the meantime to help myself, any help please I am worried.
It's a huge shock when we're first diagnosed with osteoporosis and I can understand your concern about possible fractures. I'm surprised you haven't been sent for an x-ray prior to your endocrinology appointment in February, as that would give a clearer picture for the specialist. Maybe it's something you could ask your GP to organise? The best way to help yourself in the meantime is to avoid anything that might cause fractures, so avoid bending your spine forward, definitely never bend and twist at the same time, if you have to lift anything, hold it at chest height pressed against your body or as close as possible and don't lift anything heavy. If over-the-counter painkillers aren't helping, ask your GP for something stronger (eg prescription strength co-codamol), but don't use this to mask the pain in order to do things that might prevent healing or even cause further damage. With back pain it's usually advisable to keep mobile, because if you simply sit or lie around, the muscles that support your back will weaken, which will cause more problems in the long term. Keeping mobile, however, might simply mean pottering around the house, or if you're able, going for short walks. If you can afford it, I would recommend seeing a private physiotherapist, but make sure they know you have osteoporosis and might have a fracture. There's lots of good advice on the ROS website: theros.org.uk. Finally, at this stage, though you suspect a fracture, it isn't definite and there could be other things causing your back pain, so (easier said than done, I know), try not too worry too much until you have a proper diagnosis. Osteoporosis itself doesn't cause pain without fractures, but there are lots of other things that can cause severe pain too, slipped discs being a good example of this.
thanks, but I also get a bit breathless when I go for my walk, does my report from dexa scan look bad, I have been doing weight training for years to keep my bones strong now I can't do them.
Do you have a copy of your full DEXA report? Is -4.1 your average spine result (L1-L4) or is that just one vertebra? What's your hip and/or neck of femur score? You should also have a FRAX fracture risk score (eg 10% risk of fracture in the next 10 years). 8 years ago I was told I had severe osteoporosis with a t-score of -3.2 in my spine, but my hip score was -2.3 and I hadn't had any fractures. I've since discovered that the spine result was wrong, so at that stage I almost certainly didn't even have osteoporosis! Until you know for certain whether or not you've had a fracture, it's very difficult to know how bad your osteoporosis is. It does sound as though you may have had a fracture, but "suspicious for" doesn't mean this is definite, as there may be something else causing the deformity and pain.
I have just received a blood form,for bone profile, (crp),u&e(with egfr)(ue)vit d(vitd)vit d=prior to bisphosphonate/denosumab, so it looks like zoledronic acid infusion then denosumab, is that the way to go.
That's good if you have a zoledronic acid infusion first, as this will make sure you can tolerate it. If you ever have to stop denosumab injections it's essential to go straight onto another medication, usually something like zoledronic acid. Whether or not to take the medication is something you need to decide, it isn't something I can advise on. You do need to know whether you've had a fracture to help make this decision.
Met00 thank you so much for this useful post and for the links to Saveourbones and the Frax score calculator. I have already booked for a REMS scan with Dr Birch due to the useful information on this site. Thank you for taking the time to enlighten others
if it’s really bad you could ask for infusions I have Zoledronic acid once per year so no tablets but I have long term bowel conditions so that’s why I have the infusion plus I refused the tablets.
I am due to start infusions in March. The once a year ones for three years.I hope you don’t mind me asking…. How have you coped… I found aldrenolic acid once a week then later once a year used to make me feel sick. That’s why I have been told to go down this route. I just have to finish my dental work first 😞
ummm I don’t like to say as i don’t want to put you off but I was due my second infusion in November but I’m delaying it due to the side effects I suffered for the first two weeks I was very Unwell and the bone pain is out of this world but the bone pain does wear off however I’ve been on anti sickness medication ever since my first infusion. It does get easier but took me at least 6 months.
Please search Zoledronic acid on here to get others experiences because some don’t have the side effects i did but a lot get tummy pqin and sickness.
Sorry I can’t be more positive but I will have the second infusion in February I just can’t cope with the illness it gives me at the moment. It did improve my t score for my spine which is why I will continue it went from -3 before Zoledronic acid to -2.3 after a year on it. My hips didn’t change still -3.3 but I am happy about the spine improvement to carry on the infusion once I am brave enough.
omg thank you so much for answering . I am so so worried. My score is-3.5 I don’t know for where? Everyone on this site seems to have different scores for different parts of the body but I was just given this one score . I came off tablets 14 months ago after they as I said earlier really upset my stomach making me feel sick. I hat3 that feeling… hate feeling sick.. in fact I am a real wimp , seem to have got worse with age I am 73. Didn’t even know I had flip in osteoporosis till I took a bad fall in Tenerife on last day of my holiday three years ago and broke my hip. Felt really fit. To be honest still don’t feel all that bad at all. Had a couple of teeth out and was told to delay the infusion or my jaw could collapse…. Omg it is all so scarey isn’t it?
Assuming you're in the UK, you have a right to ask for a copy of your DEXA scan results, which should include t-scores for spine and either neck of femur or total hip or both (spine plus one or two hip scores), plus a FRAX fracture risk score. Depending on your other score(s) -3.5 may not be as bad as you've been led to believe, although of course your hip fracture does suggest that you may be at high risk of fracture, assuming you fell from standing height (low impact) . My last DEXA scan gave -3.6 in my spine, but only just osteoporosis at -2.5 in my hip. 15 months later a more reliable REMS scan gave -2.6 for both! If you want a second opinion and can access and afford a REMS scan (£200, includes consultation), I would definitely recommend it.
hi thanks for that yes I am in the uk. Nottinghamshire. That sounds interesting never heard of a REMS scan…. Can you recommend a consultant please and what is the difference in that scan and a dexa scan? I fell after tripping over a tile that was stuck up uneaten in a hotel corridor as I was walking. Went down severely…. Had fallen on ice a few weeks earlier after slipping and only bruised so it was a hard fall.
REMS scans are newer technology that uses ultrasound instead of x-rays to give t-scores, z-scores, FRAX fracture risk score and an additional bone strength score. The technology was developed in Italy, where it's already approved for diagnosing osteoporosis, as it is in the US. Sadly our NHS is much slower to accept new technology. The scans are more fully automated than DEXA scans and, while they've been shown to be similar in accuracy to DEXA when both are done properly, the automation and different technology means they're less open to error than DEXA. There are 2 centres that do REMS scans, one is at a physiotherapist clinic in Amersham (so I imagine too far for you, unless you have other reasons to visit). The other is based in Daventry, but runs clinics around the country: osteoscanuk.com/. They do get booked up well ahead though. I think the nearest to you is Lincoln, so a bit of a journey if you did want to get it done.
I'm not sure whether your fall would count as a fragility fracture or not. Do you think most people would have fractured with such a fall? If so, you could query it with your GP, as it's likely they took the fracture into account when assessing your fracture risk.
thank you soooo much for your advice… yes I can get to Lincoln on the train. Yes I think most people would have done damage with the way I fell. My husband thinks so too so I am going to see if I can get a Rems scan niw you have said that . I will look into going even if I have to pay private. x
well I’m only 36 I’ve had osteoporosis since I was 29 but only started the infusions last year after I was admitted to hospital for other health issues fell out of bed and had an allergic reaction to the meds (I told them I was allergic to before hand) ended up breaking all my ribs on both sides in multiple places it was horrific. The pain is unbearable I will never forget it. I also broke the neck of my femur in 2012 when I only had osteopenia just for running on the roads.
The medication is worth it as I’m too scared wcter those breaks plus I had to have a total hysterectomy this year with everything removed so I’m even more high risk not having my ovaries 😱. Nightmare I must be brave and have the infusion in February.
I don’t know much about the scores just always given spine and hip for me but could be different elsewhere mines via nhs as my rheumatologist is amazing I have health insurance but the bones I’ve kept via nhs everything else is private but they have been good to me so far bones wise.
The sickness is horrible I take metoclopramide daily since the first infusion and it does really help me worth asking your doctor about.
I hope it all goes well keep us updated and you can always message if you need to talk zx
awww thank you so much. Oh my goodness you are so young .. I really hope you feel better soon. Please keep me updated. Will let you know how my infusion goes ….if I end up having it🥲xx
Great replies above. I would also get checked for things like Coeliac disease if I were you. If you are coeliac like myself then you could have absorption issues. Take care and don’t panic. It’s very important that you keep up exercise. Don’t let them scare you into stopping your dancing and walking.
I would ask to be referred to a rheumatoligist. With a bone density reading as low as that, you need to see a specialist who will be able to prescribe better treatment (GPs can only prescribe the oral meds, which are usually only given for less severe osteoporois.) I would ask your GP to request the referral as urgent. I have had several fractures in my spine, and my bone density was similar. I've had no side effects from the treatments prescribed by the rheumatologist.
Go and get hyperparathyroidism ruled out. Its known to cause osteoporosis and can be symptomatic however calcium being leaked from your bones does cause pain in joints and muscles whereas osteoporosis doesn't cause pain unless you fracture some thing x
Hello. You sound as shocked as I was a few years ago, to be given this diagnosis 😳
I, too, don’t really take medication, except paracetamol and I also enjoy healthier foods ( mostly!).
I slipped (on a banana skin…I know!🤦♀️) and fractured a bone in my pelvis… my first broken bone ever (aged 60)
Anyway, I was told to take drugs and I decided to do my own research and discovered HYPERPARATHYROIDISM… nothing whatsoever to do with the thyroid.
I had to have a very small operation and was told by my surgeon that no amount of osteoporosis medication would have made the slightest bit of difference whilst I had hyperthyroidism.
So, now I just exercise… mostly walking… try to eat the right foods that can help (even prunes~ yuk!) .
It’s just a simple test for hyperparathyroidism- my GP had no idea and was glad when I shared my research.
I also have Lichen Sclerosis… if you don’t mind me asking, are you having any treatment? I’m not, at the moment…but wonder if I should…
Wishing you good luck and try not to panic… there’s a lot of genuine support here.
Thank you for sharing your experience. So glad to hear that you are now on the right track after your op! I will definitely make sure that I do not step on banana skins in the future!!!
As for the Lichen Sclerosis, well, that started two months after I started taking Alendronic Acid. Coincidence?! I think not. When I looked at the leaflet, it stated Skin Rashes on the side effects! A helpful female GP at the surgery prescribed Dermovate Cream which I had to apply every night until it improved. I just use it twice a week now. It worked its magic! She also gave me something called Dermol 500 which you can use either as a liquid soap to wash with or apply directly as a moisturiser. Brilliant stuff which I would highly recommend!
Hi! I just took one Alendronic acid and I was violently sick the next day. Luckily or unlucky I was in hospital unable to walk because my T 12 had fractured. So they actually witnessed how sick I was. I was flat on my back for about a week. I was taken off of them and when I came home a nurse came to show me how to administer injections of Terraparatide. No sickness nothing. You can only take them for two years then I went over to Denosumab which I go to the surgery for every six months. So there are other medications out there. I hope you get on with the new one.
I think your best bet is to speak to The Osteoporosis people. They deal with all sorts of things bonewise and medications for them. They are working with Specialist in that department all the time. I’m sure there’s something out there that would suit you. I certainly wouldn’t trust my luck without medication. I of course would rather not take any medication at all but I probably wouldn’t be here if I didn’t.
Lots of very good advice above so I won’t add to it other than I see Nick for REMS scans every year, he discusses his findings on the spot and he is very calm and positive I will just say well done for going back and telling your doctor what you thought of his bedside manner! One person’s ‘ honest and direct’ is another persons ‘scary lecture’. As for it being a Friday afternoon - that is no excuse.
I suspect it is still very common to use scare tactics to get patients to take osteoporosis meds. I had the scary gloom and doom lecture from the hospital osteoporosis nurse - wall to wall mention of comorbidities and mortalities. I found it absolutely horrific.
I was so scared that I took alendronic for four months - I was scared to take them and scared not to but I felt so ill that I stopped it, my rheumatologist wants me to take infusions but I couldn’t bear to feel so awful again.
I also get emails from the saveourbones site and Margaret Martin’s site melioguide.com/ is well worth looking at. She does a good book and videos too.
I'm so glad that I'm not the only one who tried hard with alendronic acid because I was scared not to! I, too, took them for four months until I couldn't stand the stomach trouble any longer! Thank you for your recommendations. I will check them out!
I haven't needed nor taken AA but I thought I was going to have to. I did a lot of research and the result is in my story, linked here, which may give you some ideas about things you can do to help your bone density, even if you continue taking OP meds for a few years.
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