I've just had my 4th REMS scan and am really pleased with the results. I've now maintained my bone density for 5 years, since my first REMS in 2019, and my hip bone density is virtually unchanged since my last DEXA in 2018. My spine density improved after I started taking a low dose strontium citrate supplement in 2020. I reduced that after my last scan 15 months ago, but more recently have started taking a hydrolysed bovine collagen peptides supplement, which, together with a bit more resistance training, has maintained the gains. My z-scores are now -1.1 hip and 0 spine! I'm a very happy bunny! The only disappointing thing is that my bone fragility score is slightly worse (but fracture risk still very low), so the consultant recommended more impact exercise and suggested using a rebounder (mini trampoline) and/or doing the online Onero course.
REMS bone scan results - density main... - Bone Health and O...
REMS bone scan results - density maintained without medication
Well done, such good news, I am SO pleased for you Met00 - no wonder you are a happy bunny.
Can I ask where do you buy your hydrolysed bovine peptides from and are you still taking the usual magnesium, boron, K2-Mk7, vitamin D, calcium and anything else interesting?
I'm currently using Vitabright collagen peptides - I can't remember where I bought them (possibly Amazon), but guess they were on offer as I bought 2 tubs together! I rely on mostly on diet for calcium (just take 200mg a day calcium citrate because I read you need extra calcium with strontium citrate) and have to get my magnesium from diet because I haven't found a supplement that doesn't aggravate my IBS. Yes to boron, K2-MK7, vitamin D (enough to keep blood level over 100nmol/litre), and I also take 15mg zinc, although I'm not sure whether that's necessary.
Thank you - whatever you’re doing it works and it’s good to hear good news about b9nes.
That’s great news. Of course you must feel relieved.. no need for nasty drugs the doctors are so keen to prescribe when we all know they really shouldn’t be used, doing more damage and forcing one to take such drugs for ever.
Bisphosphonates are proven to reduce bone fracture rate compared to a placebo, so why do you think they shouldn't be used? I've been taking ibandronate for 5 years with no ill effects.
Bisphosphonates can be helpful in the short-term, but they work by holding onto old bone, which interrupts the bone remodelling cycle, meaning that the trigger for making new bone is slowed or even halted. That means in the long run you can end up with a lot of old, poorer quality bone, which in some circumstances can result in unusual fractures. That's why it's recommended where possible to have a break from treatment after 5 years, and in fact the NICE patient decision aid says there's no evidence of treatment preventing fractures if continued for more than 3 years, compared to stopping after 3 years (nice.org.uk/guidance/ta464/....
I'm glad that you've found the medication helpful and agree that the evidence is that bisphosphonates reduce fracture rate by 50%. If I had a high fracture risk and were able to tolerate the medication, I would be more likely to try this. But bear in mind that it's fracture risk that's halved, so if you have a fracture risk of, for example, 20%, a bisphosphonate would reduce that to 10% - or put differently, 20 in 100 with that same risk would fracture without medication, 10 would still fracture with medication, 80 would never fracture, even without medication. In addition, lots of people do get intolerable side effects from bisphosphonates, one of the main reasons why so many stop the treatment within the first year. Unfortunately bisphosphonates are required as a follow-on treatment after a number of the other medications, which then rules those out too if you can't take a bisphosphonate!
Thanks, that pretty much corresponds with what I've read. However, I was quibbling about the statement that they should not be used. If you are concerned about my 5-year use, I'm taking ibandronate to stop breast cancer getting into to my bones, but that's another story.
First of all, I cannot take bisphosphonates (hiatus hernia hence Gerd _ acid reflux) and secondly, none of these ´osteoporosis ´ drugs help rebuild strong bones. As soon as one has to stop using them there are rebound fractures. One has to keep in taking such drugs for ever… The truth is NO drug exists that actually rebuild strong flexible bones, preventing fractures from occurring. Many people who use such drugs do actually get fractures… they should not.
There are many serious research papers that would explain this to you or anyone interested,
Getting nutrients that keep our bones healthy or healthier is a better option plus exercising if one is able. Unfortunately I cannot exercise as I used to.
It is also a well known fact that DEXA scans do not always give accurate measurements…
Of course it is quite a problem when fractures happen and one has little choice. I do hope a drug will eventually be developed that will really help in rebuilding bones without any nasty side effects.
I've done a fair amount of reading and research myself and I do know the drawbacks of bisphosphonates. However, data published by the BMJ bmj.com/content/381/bmj-202... show a reduction in fracture rate. There is some doubt as to whether this applies to all people with a diagnosis of osteoporosis, and there are other aspects which are less clear or unproven.
It is also very difficult to rebuild bone, most people can only expect to slow or stop the decline, or rebuild 1 or 2 percent.
So people at high risk of fracture may well benefit and I think it's a bit rich to say they should not be be used.
Am sure many people look at serious research papers. However, many people are getting quite scared and feel pressurised when they are told they must use such drugs .
It is a decision one has to make, weighing risks V benefits.
I personally would not (can’t) use Bisphosphonates .
Having been convinced that Prolia injections, every six months, would help rebuild my bone density a long time ago without being made aware by the so called osteoporosis professionals that it would lead to rebound fractures of the spine should I need to stop them, as was the case when I needed intensive treatment on my teeth… I am very much against these drugs. I paid the price… compression fractures of lumbar spine !
There was no way of checking this on Google in those days, otherwise I would have refused and I don’t think I would have had any fractures since, in those days I was able to exercise a lot as well as having a good diet. I speak from experience of the dangers of using such drugs when often one has only got osteopenia…
Yes, each person has to consider their own position. I've never been made to take anything and do feel I was given enough information to make a sensible choice. Guess I'm just lucky.
Yes perhaps you’re lucky. I and many other people were not. Keep well.
I have told my story before and got a less than friendly response about "people like me". I will tell it one more time and not read any commentary thereafter.
I was told by my endocrinologist that I needed to go on Prolia. Since I have two chronic illnesses, I have experienced that doctors, since they are human beings, can make mistakes (sometimes with dire consequences). To me it is therefore wise to double check everything, especially when it can have far reaching adverse consequences. I called Amgen, the manufacturer of Prolia, and was pleasantly surprised that they took the time (almost 30 minutes) to talk to me. After giving them all the information they asked for, including my DEXA results, their medical advisor said that the company, in my case, can not recommend Prolia. My conclusion was that, if the company, who makes money with their product, recommends against using it (in my case), there is a very strong possibility that (again, in my case) taking it will not be beneficial.
These drugs are not benign. And to me it is very important to weigh the risks vs the benefits as it is with everything I put into my body. I'm not saying you should never trust your doctor. I'm also not saying to never take any drugs. What I'm saying is to be vigilant and make sure to be as safe as possible.
'It is also a well known fact that DEXA scans do not always give accurate measurements… ' Thank you for writing that, Is it true? I fractured T8 and T12 in May and have had standing xrays and MRI STEM scan and they show they're surrounded in fluid and not healing. I've had another DEXA scan and was told yesterday that although I've got fractures (they're still agony) I'm not classed as having Osteoporosis!! Hence I don't qualify for the newest injections, I'll have to have infusions every 18 months. I asked wouldn't it be better in the long run for myself and the NHS to give me the new treatment but they won't budge, now I'm wondering about the results🤷♀️ I'd rather feel as if I was taking something to help myself ,the pain is making me disabled.
From much reading it appears that the Dexa scan machines are not 100% reliable for various reasons. If one can’t quite lie flat because of pain then the results cannot be accurate . It also depends on the person doing the scan, apparently always best to have the same machine and same clinician, which isn’t always possible, as we know.
Perhaps you might be able to research this.
It is a minefield. Wishing you the best.
Hi,
We appreciate thoughtful discussion around osteoporosis and bone health in our community. While we encourage open dialogue, as we note in our community guidelines “if statements are set out as proven facts where they are not, this can be confusing and misleading for those reading posts”. We want to clarify that the main aim of all osteoporosis drug treatments is to lower the chance of breaking a bone. As mentioned, osteoporosis drug treatments reduce risk of fracture by an average of 50%. There are many different drug treatments that are taken differently, and work with our bones in different ways. We have lots of information on osteoporosis drug treatments on our website: theros.org.uk/information-a...
Our community is full of diverse experiences and needs, so we kindly ask everyone to be mindful when sharing as we know, everyone’s health journey is different. What works for one person might not work for another. For some, understandably, medication may not feel like the right option, for others it will be an important step.
If you have any questions about moderation in our online community, we ask that you private message us directly in line with our community guidelines: healthunlocked.com/boneheal...
Let’s continue sharing our experiences while creating a positive and safe space for all members.
Thank you for your understanding,
Lulu
ROS Moderator
Thank you Lulu, however one can only relate to one’s experience of using certain drugs and the experience of a few friends. It is not made up in a negative way to upset people but an element of truth is most important in helping people to make their own choices. Unfortunately we do not know enough about these drugs. To be fair this is the case for many ´strong’ drugs.
Fractures (and preferably the avoidance of) are not exactly an easy straight forward subject.
People need to have all the facts in order to make the right decision for themselves. Not an easy path,
Met00 what great news. I really fell happy for you. Did you ever take any medicine? If you dont mind, I would like to ask you some questions, since I ´m doing a little benchmarking. May questions are bellow and I would appreciate to have your answers:
- How old are you and when you was diagnosed with osteoporosis or was just osteopenia?
- How many times a week did you exercise ( weigh bearing, walking, run etc)and for how long?
- Did you ever take a medicine and what family ( bisphosphonates or anabolic ) ? For how long, if you did take any.
- The bone fragility you´ve mention above, where a result of your DEXA or other exam? What about FRAX?
Thank you so much
Hello Varauk. I don't mind answering your questions, although I'll have to qualify some of my answers! I'm 68 and was diagnosed with osteoporosis by DEXA scan 10 years ago, with a hip t-score of -2.3, neck of femur -2.5 and spine -3.2. However, I've subsequently found out that my spine scan had errors in it, in which case, going by the neck of femur score, it was only on the cusp of osteoporosis at that stage. Just over 6 years ago I had a second DEXA scan, which gave a hip t-score of -2.5, neck of femur -2.9 and spine -3.6! Following that scan, I heard about REMS scans, which were new to the UK at that point, and just over a year later (so 5 years ago) I took the plunge and had my first REMS scan. That showed hip -2.4, neck of femur -2.6 and spine -2.6.
It's difficult to say how many times a week I exercise as this varies enormously. At best I've gone out for walks several times a week, plus done resistance exercises (weights and resistance bands) 3 times a week and some high impact exercise (eg heel drops, jumping, hopping, skipping) from time to time. But I lead a fairly busy life and exercise often gets missed, plus there have been many times when I simply haven't been able to do much, due to tiredness, sickness or injury! I've had one or two minor injuries from exercise itself, but I don't think that's ever been the reason for not being able to exercise for a while.
When I was first diagnosed, my GP persuaded me to take medication, warning me that if I didn't, I risked ending up in a wheelchair or worse! She prescribed bisphosphonates: Alendronic Acid, which gave me reflux, so switched to Risedronate after a few weeks, which I persevered with for a year. According to DEXA my bone density declined between the two scans. I've taken nothing since, but did start introducing a wider variety of exercise and taking more supplements once I realised that walking alone wasn't going to build bone.
Most DEXA scanners don't measure bone strength, just bone density. The exception is a small minority that also give a trabecular bone score (TBS), which gives a better indication of strength than density alone. The fragility score I mentioned is only available on REMS scanners, and is one of the advantages of REMS over DEXA. REMS is also more reliable than DEXA, because it's more fully automated and therefore less open to operator error. Unfortunately, although REMS is recognised for diagnostic purposes in both Italy and the US, here in the UK there's no official recognition, although some doctors will accept its results.
According to FRAX, in the next 10 years I have an 11% risk of any major fracture and a 3% risk of a hip fracture. According to REMS, in the next 5 years I have a 1 - 2% risk of a spine fracture and a 1.5 - 3% risk of a hip fracture, but it doesn't give the risk for any major fracture, which would include forearm and shoulder, as well as spine. Note that REMS calculates for 5 years, FRAX for 10.
Met00 thanks once more for such detailled informations, that help me understanding more about Osteoporosis. Unfortunately REMS is not available where I live, but since my daughther lives in Uk, I will try to do there next year. I have the same age of you, and I started on Risedronate for the same reason you did, it means, persuaded by my doc. I introduced weight bering in my rotine, plus walking and swimming that I used to do. I try to exercise every day, except on sundays when I rest my body. What I thing I may include in my rotine are vitamins, since I dont take any supplements) and my died is poor in protein since I became pescatarian 10 years ago. People used to say that at our age we shall eat around 80 gr of protein a day, but it is hard to reach this target... Any way, I will continue with my medicine for some more months( one year) and than I will try to schedule a REMS.
But I´m really glad for you!!🎉🎉🎉
Hi Verauk,
Just read this thread and noticed what you said about protein and have to pass on this info. I have recently had the REM in the UK, I wont go into that but just to say that the specialist gives advice with the result and he said the most important thing along with exercise to strengthen the muscles was to get enough protein for the muscles so they can protect our bones. He was really strong on this point and it does make sense. In your case you can supplement with taking protein powder, there are a lot of choices, I take Hemp powder and make it into a drink and take it after exercise.
Pebbleheath thanks for taking time to answer me! Could you say where do you by it and brand. Here where I live thare many types but I want to buy a good one.
Another question for you and for you all is an indication of a clinic to perform REMS that you trust.
Thanks to all
At the moment there's only a choice of two in the UK: osteoscanuk.com who are based in Daventry but hold clinics around the country, and profortis.co.uk/bone-health in Amersham. Osteoscan is the one most of us in the UK use, partly because it's widespread and partly because it includes a full consultation with an orthopaedic consultant who specialises in spines and bone health. However, the waiting list for most of the clinics is very long (I believe it can be up to a year in some cases), apart from at the headquarters near Daventry, Northants. Profortis is cheaper, but is run by a physiotherapist rather than an orthopaedic consultant, and the price doesn't include a full consultation, although you can pay extra for that. I've always used Osteoscan and been very impressed with it, but I have heard of people who have been equally pleased with Profortis.
Yes, I can tell you, its just a make that I feel is good and I like it, I get it in local health food store and Amazon, Naturya Hemp Protein powder. The REM in the UK is with Osteoscan, they have a web site and are based near at Daventry near Northampton. Also does clinics around the country. I hope this helps.
I was expecting my results to be better than the Dexa but they were in fact a bit worse and my fragility score is not good so although I was disappointed with that it has made me get to it and work hard.
Pebbleheath thanks to you also. I will look wich of the two places you and Met00 indicated are close to Surey and the acess can be done by train( I dont drive in UK☺️).
Thanks again
good news! What’s the Onero course?
This is a link to it: onero.online
The onero is not a secure site so be careful if you decide to go ahead with it.
Thanks for the warning! I've just gone to their starting page and that is definitely secure (onero.online/ - and with a padlock), so does the security vanish when you sign up?
I clicked on your link. I’ll try putting it into the google search and see if that makes a difference
Both onero online came up-not secure. Then tried Onero Academy came up that was a secure site have tried to copy and paste the link but won’t let me paste it here 🤷🏼♀️
I wonder whether it depends on individual anti-virus programmes? Strange that it's a secure site on my computer but not yours 🤷🏻
It was secure when I looked it up.
That's really good news and gives hope to us all. Thanks for posting. I'd heard of strontium ranelate (which I think needs to be prescribed), but not strontium citrate. Definitely worth investigating!
You need to be aware that strontium ranelate can aggravate existing heart and kidney problems and may raise blood pressure. It isn't known whether strontium citrate carries the same risk - it depends whether it's the strontium itself causing the issue, or the ranelate compound.
Thank you. Oh dear, there seems to be no medication without possible side effects!I hope you continue to do well on your regime. It does suggest we are medicated too quickly.
Congratulations, Met00. That is fantastic! Looks like you worked hard to avoid the drugs and had great results. Way to go! Keep up the good work. So happy for you. And....thanks for sharing hope.
I'm very happy for you, Met00 ! Well done. No wonder you're pleased. 
Belinda Beck's exercise program in the LIFTMOR trial is demanding and must be done under supervision. It's interesting she's put together a less rigorous, more accessible program for home use.
Bone Density Scan
>1.0 DIFFERENCE BETWEEN T-SCORES HIP & SPINE ON DEXA?
DXA v REMS
DXA vs REMS
DEXA scan - help please interpreting my results and help with my suggested regime to improve my bone density
