Fractures

[Olliemaya]

Hi I have been reading on this forum about fractures. As of now I am not on any osteoporosis medication. I have been offered it but for now have decided not to take any. I am going to my doctor soon and will request a copy of both my dexta scans. Can someone answer the questions of if you are taking the Injections do you still have a high risk of fractures and has this happened to someone who is already on them. Also have read that when you stop the course of medication that you are on then there is a higher risk if fractures. Maybe I have read it wrong but wld help me in my future decisions about medication. Wishing you all a Happy New Year

[Fruitandnutcase]

Welcome to the group Olliemaya, a good decision to start by obtaining a copy of your DEXA results, you are legally entitled to have access to any and all of your test results.

I would recommend that as well as looking at people’s experiences on her you have a good look through the ROS website - it covers every aspect of osteoporosis theros.org.uk/information-a... and there is also a helpline where you can speak to one of their nurses.

The one treatment I would be wary of is Prolia - if you stop that or are even late in getting your next injection you are at risk of rebound fractures and need to go onto a relay drug which is usually a bisphosphonate and yes people taking drugs for osteoporosis can still fracture.

This chart shows you a bit about it although it was last revised in 2019 nice.org.uk/guidance/ta464/...

I would certainly work my way through the information given on the ROS site , read the comments etc on here and take your time before making your decision.

[Olliemaya in reply to Fruitandnutcase]

Thanks for taking the time to reply to me. I was offered the monthly injection (eventy) and had decided to start it as I felt at my appointment with my osteoporosis specialist I had to make a choice between alendronic acid/ infusion. Weekly injections or this eventy. My score on my dexta scan was -4 in my spine and she said it was really important for me to start the eventy. After reading about it and the side effects I have decided against it for now. Maybe at a later date I will reconsider. Thanks for all your help

[Fruitandnutcase in reply to Olliemaya]

I would definitely call the ROS helpline and speak to someone about all of your options.

Did you read about Evenity on the ROS drug page? It looks as if you only take it for a year and then have to go onto another drug such as a bisphosphonate straight away but if you speak to one of their nurses they will explain all about it.

Have you had blood tests to establish possible causes of your osteoporosis? You would want to have blood tests to be checked out for all possible causes for example if you have hyperparathyroidism you would want that treated before starting drug treatment nhs.uk/conditions/osteoporo...

I haven’t used the helpline but people who have done are all find the responses very helpful. Minus 4 is quite a high score - have you had any fractures?

[Olliemaya in reply to Fruitandnutcase]

I havnt had any fractures. I broke my wrist when I was 45 due to a fall and I am now 63 with no more broken bones. I am going to the doctors so will as to be tested for blood to see if there is anything else going on. Yeh -4 seems a bit higher than a lot of people on here so dnt know how much more serious my osteoporosis is. Thanks for taking the time to reply as it really gets a bit much not knowing what is the best thing to do

[Cilla65 in reply to Olliemaya]

Hi Olliemaya, I am writing from Italy where I currently reside. I have an identical score on my spine and I am currently followed by a specialist who believes that supplement and exercises can help you getting better. I discovered it in March through a screening and never had a fracture in my entire life. The specialist prescribe me all the bone metabolism markers test, blood and urine and my score are very good. I currently take vitamin D3 once a week 20.000 u.i., K2 vitamin 200 mg a day and 100% bovine collagen 15 gr a day, eat protein rich food 1.6 per kg of weight and walk just over 6km for 5 day a week at about 9 mins a km. Plus I exercise with light weight for around 20 mins a day. Also done a REMS scan with a -2.9 t-score (still low density) with a low probability of fracture in the next 5 years (good bond quality). My specialist told me that I may never have known without the screening because fracture is only a possibility in my case. I will have another dexa in June and cross my fingers.

[emersee in reply to Cilla65]

I am curious that you say your scores are very good! Neither -4 nor -2.9 are good. If you need another DEXA and are crossing your fingers already, that means you probably have concerns.

[Cilla65 in reply to emersee]

Of course I have concerns. My bone markers are good not my dexa. Dexa scans are part of the assessment. So I actually have a low CTX (a marker that measures the osteoclast activity) and my bone building markers, osteocalcin fir instance, are at a medium-high level which means osteoblast activity, I am building bone at a higher speed than destroying it. The low density could be related to a collagen deficiency and low D vitamin which I am both fixing (d vitamin is now at 61 from 15 but the specialist thinks I should be between 80 and 100). I had also to rest for a few month due to 2 retina raptures also probably due to low collagen and inactivity is the best feeder of osteoporosis. I had 2 dexa scans done at the same centre and a REMS scan elsewhere , these all showed low density but with a tbs score and fragility score good due to my bone architecture in good shape. The dexa scans had images of my lumbar vertebras and actually the second was looking at the wrong ones L4 was missing, L3 taken as a L4 and so on, so the specialist who visits in Rome twice a year suggested a specialist he trusts to redo it to obtain a more trustable result. No fractures in my life ever no family history so I hope that possibly I am reversing the situation with a drastic lifestyle change, I hope so. My dad was a victim of Vioxx a medicine that caused many people to die for heart failure so if I can I will try not to use medicine at the moment and I will reassess in June crossing my fingers 🤞🏻.

[love42france in reply to Olliemaya]

Please remember your Specialist will have at least 15 years experience and may well have 20 years or more. Your c scores are low and they don’t offer drugs lightly. I have ongoing spinal vertebrae that is crumbling and now have a fracture. I am in constant pain. My aunt was on a zimmer frame at 80 and housebound with it. I am 78 and just walk with a stick outside the house so I am grateful I saw a specialist. It is your choice but all the advice on here will not supersede that of a trained specialist.

[emersee in reply to love42france]

I could not agree more with what you have posted. Medical treatment is key. Otherwise, for the people here who do not take medical advice, why do you attend doctors at all?? Just stay away and let them treat patients who want to be helped.

[dcdream in reply to Fruitandnutcase]

My doctor basically explained to me that with all osteoporosis meds it is a lifetime journey of taking meds. Talking to many who do, reading this forum, often one med works for awhile, then doesn't and then you start a different one. they all have their own side effects and consequences. Take your time with your decision and do what's right for you. Obviously, if it was an emergency, your medical system would not have its citizens wait months to see someone or be tested.

[Olliemaya in reply to dcdream]

I completely agree with you it is definitely a choice the person needs to make for themselves. When reading about the different medication and the side effects it just wasn't right for me at this moment in my life. I might revisit the decision in the future if I feel the need to Wishing everyone a healthy new year

[emersee in reply to dcdream]

Many illnesses are chronic, in other words, treatment is for life. People need to accept that. Those with diabetes, asthma, high blood pressure etc fall into this category of needing a change of treatment now and then. This is no different.

[emersee in reply to dcdream]

This is same for ALL chronic diseases.

[emersee in reply to dcdream]

That just describes all chronic illnesses.

[emersee in reply to Olliemaya]

I think you are being passive and ignoring the problem.

[Cilla65 in reply to emersee]

I believe that to manage osteoporosis you need to understand the root causes of your situation and then start your intervation path. Doing nothing or take the usual course of treatment - anti re-absorption drugs - was not going to work for me as this is not what in my specialist opinion I need. That’s why I am considering bone building drugs such as bio identical hormones therapy and it needs to be assessed - if I can take them and the benefit of it. Jumping in a decision is not a good decision as much as not taking action and wait.

[soppysokes]

hi, my score is as yours for spine. age is 75. dexa scan first done about 15 years ago, took alendronic acid for first 5 years made no difference really. I found it very unpleasant stomach wise, was offered yearly jab but declined. I have taken nothing since and, as yet anyway, have never fractured anything to my knowledge! pro’s and con’s to all approaches and it can only be a personal choice along with hopefully good medical guidence. imho.

[Olliemaya in reply to soppysokes]

Thanks so much for your reply. I have been thinking of what is the best thing to do and personally for me at the moment is to do nothing. I am active and very healthy apart from the osteoporosis. Hopefully I can continue staying fracture free. Wishing you the very best

[dcdream in reply to Olliemaya]

I'm in your same situation. Have not taken meds and been diagnosed at age 58. Am 70 now and no fractures. Like you, I'm healthy and am not on any meds for any illness.

[Olliemaya in reply to dcdream]

Thats great to hear you are fracture free and hopefully continue to be that way. I will do my best to keep healthy and fracture free and hopefully be able to continue doing all the things I love. Wishing you well

[dcdream in reply to Olliemaya]

Try to not be stressed out while doing your research and also realize everyone on this site has their own health issues and experiences. What works for someone may be a disaster for you, etc. I know people who don't have osteoporosis and they fracture as well. I know folks on the meds who fracture as well. That's what happened with my mom. If things are going fine on such meds, these people probably aren't on this website, so keep that in mine as well.

[Olliemaya in reply to dcdream]

Thanks so much for your advice and for now I am just going to keep doing what is best for me.not taking any medication has been a decision I have taken and will continue to eat healthy and exercise.

[emersee in reply to Olliemaya]

Can I strongly suggest that if you are eating really well, optimising vitamin D3, vitamin K2 and appropriate daily calcium intake over many years before now - you would NOT be in this position. So why do you think whatever you are doing now, without treatment will help reverse what has already happened??

[emersee in reply to dcdream]

If you have osteoporosis, you are not healthy. You are being passive about your bone disease. Treat it.

[emersee in reply to Olliemaya]

Having osteoporosis is not healthy.

[emersee in reply to soppysokes]

You say you have not fractured - to your knowledge. Many people with osteoporosis develop compressed fractures in their spines which do not cause pain. This is because it happens slowly. So they have a wedge shaped vertebra rather than a square one with the narrowest bit towards the front. If this disease continues without treatment, more fractures will happen and the person becomes more and more hunched over, with loss of height. If any of this sounds familiar, you are probably having fractures.

[Verauk]

 Olliemaya answering your question: depends on wich family of medications you will choose and if it is suitable for you. Each person gets better results in terms os side efects than others, with certain type of medication. My advise is not start before watch all the videos about it at ROS web site or read about all the type/family of medication available, at NHS site and them discuss about it with your doctor. And it is important to evaluate your risk based on your Dexa Results, your age and your habits( active person, drink, smoke, eat healthy?) all this impacts on your bone healthy as you may already know.

[LoveEros]

Hi I am not able to take the meds so I’ve gone down the route of vitamins and minerals and also homeopathic remedies. I have just been give HRT not a quick fix but worth a try. I do Nordic walking which helps with my posture, I have had a fracture in my spine. Good luck with your treatments.

[Olliemaya in reply to LoveEros]

Thanks for replying. Which homeopathic remedies do you take. I take Accrete D3 twice a day also turmeric and a magnesium once a day. Try to eat a healthy diet and exercise.

[LoveEros in reply to Olliemaya]

I have the Osteo remedies from my Homeopath

[Rooruby in reply to LoveEros]

I was offered hrt at 62 years old but was concerned about risks ascevery website I looked at stated not to be given to anyone over 60. It is so confusing x

[Olliemaya in reply to Rooruby]

Yeh thats is a bit worrying. What would the benefits of HRT for someone who has osteoporosis.

[Rooruby in reply to Olliemaya]

They said loss of estrogen causes bone loss so would help this not to mention night sweats mood swings the list goes on for me l9l. It has been hell for last 5 years lol. Trouble is all Dr's tell us different don't know who to trust. Be interesting to hear if anyone on here is on HRT and osteoporosis drugs together and how their bone density is x

[emersee in reply to Rooruby]

I have osteoporosis with vertebral fractures and I would be lost without HRT. It cleared all the horrible night sweats and mood swings.

[Rooruby in reply to emersee]

Are you on osteoporosis drugs as well and was you older like over 60 when you 1st took it

[LoveEros in reply to Olliemaya]

Speak to one of the nurses at ROS they are very knowledgeable

[emersee in reply to Olliemaya]

Are you really asking that question? A small but proven bone protective effect. This is why women get rapid osteoporosis because our hormones fall rapidly at menopause. So obviously, HRT helps with that. I think you need to do a bit of reading around this topic.

The only vague concern about HRT was that there might be a slight increased risk of breast cancer in people who already had risk factors. It is safe for most.

[Rooruby in reply to emersee]

People do read and their is alot of conflicting reports sadly I'm sure everyone knows what happens to bones in menopause but for some older women HRT was not offered or allowed due to Dr's opinions on the matter. I wish I was able to start it before 60 but now 62 and every report states not to start after 60

[emersee in reply to LoveEros]

Have you tried intravenous bisphosphonates? Homeopathy is fairy dust with no scientific proof.

[LoveEros in reply to emersee]

My results have improved slightly so will continue with homeopathy.

[Rooruby]

Hi I was on Alendronic Acid for 5 years but got worse my t score is -4.7 in spine. I then had an fracture at T12 sept 2023 which has not healed so I was offered evenity but decided against it due to side effects . I am now taking Teriparatide daily I section which I really did not want but it helps build bone so praying this was the right choice. I'm nearly 3 months in and had no side effects. I take it around 8.30pm in the evening. I had to stop Adcal D3 due to fatty liver or somthing bit confused about that. I now have to make sure I get 1200mg of calcuim daily through diet which to be honest is quite hard lol. Anyway as others have said talk to nurses at ROS they give the best advice x

[LoveEros in reply to Rooruby]

I buy a seaweed vit C supplement as is more natural.

[Olliemaya in reply to LoveEros]

Thanks I will look into that

[Rooruby in reply to LoveEros]

What does seaweed help with please x

[LoveEros in reply to Rooruby]

calcium from Atlantic seaweed

From together health

[Fruitandnutcase in reply to LoveEros]

My favourite - I tried several different types of calciumfrom my GP and they all upset my gut - they were all calcium carb9nate though - but the Together Health one works well for me 😊

[LoveEros in reply to Fruitandnutcase]

Great

[Olliemaya in reply to Rooruby]

I also was advised to start the eventy injection but I have also decided not to once reading about it. This forum has been fantastic for being able to ask questions to people who are in the same situation. I was really overwhelmed when I was at my appointment with my osteoporosis doctor as I was given the choice of 4 options and had to give a decision there and then. I did say I would start the eventy but later on decided not to. Thanks to everyone who replies and shares there life stories as it does make such a difference when faced with something that I know nothing about

[Rhubarbtr]

Hi there,

The decision on whether to take a treatment is a personal one. I have been on Evenity for a year, no side effects and my bone density in my spine significantly improved. My DEXA score was minus 2.7 it’s now minus 1.8. I had spinal fractures and a fractured shoulder - fractures are awful and I would personally do whatever I can to minimise the chances of any more. You are referring to rebound fractures which can occur if you stop Evenity and do not go onto another drug. You can still fracture on the drugs (people fracture without having osteoporosis as you know).

[Rhubarbtr]

I should clarify the fractures were before I took the Evenity.

[Teriparatide2024]

I decided I’d prefer to make the mistake of trying one of the injections rather than making the mistake of not trying them. So I tried Teriparatide (had to stop after seven weeks due to side effects). Next, I tried Denosumab - Prolia. (Apart from severe pain in osteoarthritic ankle, I have had bad constipation problems, which exacerbated my acid reflux. I think I’m beginning to get over that now, two months later).

I have decided not to have any more treatment. Never say no….. maybe in the future if I become wheelchair bound.

my spine is -3.6, I have two compression fractures there. I’ve had many other fractures in my day, but I’ve had many serious accidents.

[Olliemaya in reply to Teriparatide2024]

You sound as if you have had a really tough time. I have bowel issues also and was one of my reasons for not taking any of the medication as I have suffered from this for many years. As I said I am -4 in my spine and I am very luck so far to not have had any fractures and hopefully not in the future .I wish you all the best in your osteoporosis journey.

[Fruitandnutcase in reply to Teriparatide2024]

Have you been told that if you stop Prolia or are even late in getting your next injection you must go straight onto a relay drug (usually a bisphosphonate) or you are very likely to get rebound fractures? I wouldn’t stop it without medical advice.

[Teriparatide2024 in reply to Fruitandnutcase]

I’ve only had the first injection, and the rheumatologist said it’s OK to stop..

[Olliemaya in reply to Fruitandnutcase]

As you are saying about the rebound fractures why would that happen if you have just taken medication to strengthen your bones and then have a high risk of fractures again. That is the thing I couldn't get my head round to be honest

[Fruitandnutcase in reply to Olliemaya]

I’m not sure why it happens. There are a few articles about it if you Google but here’s one you could look at - there are other several articles

‘Because denosumab does not induce osteoclast apoptosis but arrests the development and function of osteoclasts in a highly reversible manner, it is most likely that once the drug is cleared, there is a sudden reactivation of a dormant pool of osteoclast precursors and a high expression of RANKL occurs, increasing ... ‘

pmc.ncbi.nlm.nih.gov/articl...

It looks complicated but then everything to do with osteoporosis seems to be complicated!

[MaggieSylvie]

Hi, I'm 80 and am getting my second injection in January. It's only every six months, so I have no desire to ever stop taking the injections, especially as I feel good on them. I inject once a week for blood cancer as well; not that it makes much difference to my results, and it's a pain to have to let the Macmillan nurses know when I'm running out, and then go and collect them from the van. I don't mind injecting but it's the hassle I don't enjoy. With Denosumab, you can get someone else to inject you if you don't want to do it yourself. If I were you, and having this conversation with your GP, I would agree to have the injections. Who wants compression fractures? They really put a halt on your activities!

[emersee]

Hello.

This is my experience.

I am 56y, only diagnosed with osteoporosis following a pathological fracture of T12 which caused an incomplete spinal cord injury 3 years ago. This resulting in progressive loss of power in my leg leg, bowel and bladder incontinence. I had emergency surgery to stabilise my spine. This was August 2021. I was menopausal and had severe vitamin d deficiency. However, I was very active, walking up to 9 or 10k at work.

A month later I had my first Dexa scan. My score was marginal, -2.5, however, that still resulted in a severe fracture. A month later, I had 2 more fractures. The metalwork kept slipping due to my poor bones. I was on Teriparatide, Vit D3, calcium at this point.

In January, I had a spinal fusion from T4 to L4 - this is very extensive. I had a further fracture.

My point is, I wish I had known that I had osteoporosis before I had 4 devastating vertebral fractures. I would have treated it aggressively and with whatever was advised. I would not have hope than any homeopathic item could reverse this. This is no science to prove this, so in my own opinion, do not waste valuable time on fairy dust.

I am now disabled, hunched over, cannot stand straight or stand for more than a couple of minutes due to compressed spinal nerves as a result of 4 fractures. I have had an assessment from a spinal surgeon in another country about revision spinal surgery. He is going to operate on me this year. This will be massive surgery and very high risk.

All I ask is that you really consider medical treatment. I don't think anyone here or anyone I know would swap places with me. I profoundly wish I knew my diagnosis before any fractures and that I could done my best to seek treatment.

Best of luck with your decision.

[Olliemaya in reply to emersee]

empressYour story is heartbreaking. It must have been and still is hard to live with all that has happened to you and still being so young. I wish you all the best in the upcoming surgery

[emersee in reply to Olliemaya]

Thank you.

[Fran57]

Hello.

It’s a minefield, isn’t it?? 🤦‍♀️

I, too, have refused medication ( so far at least and I may regret it further along).

I was diagnosed about 7 years ago and I just think that’s 7 years of not taking medication. I exercise and I eat a relatively healthy diet, most of the time.

I completely understand your reluctance to taking medication and I’m not sure anyone has the definitive answer… some will have decided for and some against.

I don’t think anyone is right or wrong… we may regret our decision, but we may not…

I would definitely suggest you have a blood test to check for hyperparathyroidism (nothing to do with the thyroid)…. I had it and had to do my own research . The surgeon told me that medication for osteoporosis would have made no difference all the time I was untreated for that…

There are lots of very supportive people here, all with different experiences. I am thankful for their knowledge and expertise.

Good luck,

Fran 😉

[Olliemaya in reply to Fran57]

Thanks so much for your support in my decision making. It is very difficult especially when hearing of people having such painful fractures. I am at the doctors tomorrow so will ask to be tested and hopefully rule that out. For now not taking the medication is the way forward for me and as you say might have some regrets later in life. Hopefully not.

[Fran57]

You’re welcome.

You might also want to look into getting a REMS scan from Osteoscan UK Ltd.

Fran 😉

[Olliemaya in reply to Fran57]

I have seen some people talk about this scan..what is the difference between this and the dexta scan.

[Fran57]

I don’t profess to know lots about either of them , but I believe that the REMS scan measures the fragility of the hip and 4 bones in the spine, independent of the bone mass density. The fragility score is about bone toughness and is unique to the REMS scan.

I felt a bit better when my scores were not quite as bad as the DEXA scan… maybe I was clutching at straws…

I’m sure someone else here will be able to give you more insight.

Fran 😉

[Olliemaya in reply to Fran57]

Thanks so much fran I will definitely look into this in the new year.

[emersee]

If any person here has had the horrible misfortune of having vertebral fractures, I think we would all wish it away.

The pain is horrific, and that is just the frature(s). If we do not get treatment, we will have more fractures. This leads to so much pain, disability, maybe deformity from being hunched over, people may have to look after us.

This is my last post asking all of you, to please, prioritise treating your bone health versus the fear of some side effects. I can promise you that no side effect is worse than the pain of fractures and the possibility of paralysis. You can change your future. Do not be passive.