Male, 60 yo with severe (apparently) osteoporosis and electing not to take pharmaceuticals. Just had my 3rd DXA (always same machine and operator)after being diagnosed 4 years ago. Hip has shown a 5.6% increase to going from -2.8 to -2.6. Spine has shown a 3.4% decrease from 4.2 to 4.4. Due to this anomaly I decided to have a REMS last week. The REMS is far more encouraging showing the hip at -2.5 and the spine at -2.4. As you can see, that's a massive discrepancy and so the consultant repeated the REMS to make sure and the results were the same, which means I've gone from severe osteoporosis to osteopenia (almost)! Not only that, but the REMS also measures bone quality (23.9 for the spine and 19.7 for the hip). The score goes from 0 to 100 with 100 being the worst (green, amber and red) So firmly in the green. Independent research shows REMS and DXA are comparable. Any thoughts?
DXA v REMS: Male, 60 yo with severe (apparently... - Bone Health
No advice but looking with interest as had a REMS scan a few days ago after hearing about it on here. I was impressed. Certainly reading up on it there shouldn’t be much margin of error. All good wishes.
Thank you Maisie. Can I ask, was there a difference between your DXA and REMS?
Great news! 👍🏻As someone who has refused medication too, that’s very encouraging. My recent second Dexa scan wasn’t too bad.
I was a little disappointed at first until I thought about it (and had encouragement from others here) in terms of not worsening by more than others would naturally over the few years since my first Dexa scan.
I’m really pleased , and encouraged, by your news!
I too have had a similar experience. DXA scan in 2015 gave a spinal T-score of -2.6 and osteopenia in hip and thigh. A second DXA scan in 2019 (on a different machine) showed similar readings for hip and thigh but -3.8 on my spine, which prompted the GP to insist on treatment. I tried alendronic acid and raloxifene but couldn’t tolerate either for more than a few months. Finally had a REMS scan at the end of 2020 (delayed by Covid), which gave a hip reading of -1.9 and a spinal reading of -1.6!! I felt a mixture of relief, confusion and anger - the latter because my GP had refused to question the second DXA scan readings, even though there was such a discrepancy between hip and spine, and I had taken steps via diet, supplements and exercise to improve my previous scores. And alendronic acid in particular may have left me with permanent scarring on my oesophagus. I have now decided to have another REMS scan in a year or two, and in the meantime live my life. I can still climb mountains, although it takes it out of me more than it used to! (I’m 66) But the whole experience has left me unsure what readings/machines to trust, although naturally I like the REMS scan readings better! I hope this helps. I have been meaning to post a similar post to yours for some time now, just hadn’t got round to it, but yours prompted me to reply. I’m afraid I don’t have the scan results with me to compare bone quality, I’m on holiday at the moment (climbing one or two more mountains 🙂). On the whole I’d encourage you to live your life too, whatever that means for you, and definitely without the pharmaceuticals. Are you able to move fairly freely still, and do you have any underlying health issues which inhibit you?
Thankfully I'm in the fortunate position of having no other health issues and the REMS just gives me the confidence to continue doing all of the things I like doing! I'd love to be climbing a mountain today too! Enjoy your holiday.
Hi, I understand your anger. I'm angry too to just hear here today of REMS, when neither my primary care doc nor endocrinologist ever told me abt REMS. I hope youre doing well.
Sadly I don’t think most GPs or consultants know about REMS scans, although another GP I saw was interested to hear about my results with one. She couldn’t however make any more sense of the discrepancy between the REMS scan results and the DXA results than I could. I think REMS is a relatively new technology, although research seems to be demonstrating its reliability as a measuring tool. I live in the UK and you can only get them privately, but they are relatively cheap - mine cost £150. The consultant who did it said that if there is a difference of >1 between the spine and hip/femur readings on a DXA scan, it’s likely to have been measured inaccurately - apparently there is a lot of scope for operator error.
I’m doing much better since I stopped the drugs! I only had my first DXA scan because I have hypermobility syndrome which can predispose to OP and I was having gut absorption issues, but going onto a gluten-free diet has made a massive difference - hence my shock and dismay at the second DXA results. I do have a slight postural kyphosis, and arthritis in my neck and wrists, but no vertebral fractures as far as I know, and very little height loss.
I don’t know what your circumstances are but I hope this information is helpful to you.
A NHS doctor I saw in the endocrinology department regarding my osteoporosis was well aware of REMS from conferences he attended. Unfortunately he was never able to offer me one on the NHS. I am booked in to have one privately at the end of this month and am excited about it. Hope I am not disappointed.
Interesting to read about your experience with differences between Dexa and REMS scans.I had a dexa scan (my first) in December 2019 which gave my T scores as -1.9 in the hip and -3.9 in the spine. My GP prescribed alendronic acid, which I've been taking weekly since the then.
I read about REMS scans on a Facebook group for osteoporosis and was intrigued to know whether the large discrepancy between my hip and spine scores would be confirmed by such a scan. I had a REMS scan last month and it scored my hips and spine as more or less the same, at -2.7 and -2.8. I find those scores much more believable.
Although I do definitely have osteoporosis, my fragility scores were just inside the "green" section, which was reassuring.
I'm still taking the alendronic acid, on the advice of the REMS consultant, I use a Marodyne Liv vibration plate every day and I take the usual recommended supplements.
I shall have a follow up dexa scan in December and a follow up REMS scan in the summer of 2022. It will be interesting to see any differences from the baseline.
Thank you for your response. DXA is the gold standard but in independent research, REMS is certainly comparable for accuracy.
And funnily enough, the consultant suggested that the only thing missing in my approach for natural reversal of osteoporosis is a vibration platform. I don't think I can justify the cost of the Maradyne though but will be getting something less expensive.
Hi, I recently started a 6-month membership with Osteostrong, which means one session per week of their weight machines, vibration platform, etc. It's too early for me to offer an informed position, but its the first time I have used a vibrational platform. Incidentally, be careful if you suffer with vertigo, motion sickness, or vestibular issues. I felt slightly nauseous after 2 minutes on the machine.
I think DEXAs being the gold standard is because that was all there was. However, they are open to discrepancies- if you are not placed in an identical position from scan to scan then the numbers are not accurate. If a different machine is used then the numbers cannot be a direct comparison. I don’t think (may be wrong) that DEXAs allow for small people with tiny frames as the comparison is with “the average 30yr old, the average 30yr old being over 5’ 3”/160cm
Hopefully REMS will replace DEXAsbut it will take a long while.
Thank you so much for posting your experience! I’ve had a similar experience as yours with results from DEXA versus REMS. It is exciting and encouraging—and also a bit confusing. One hears that DEXA is the gold standard and REMS is still experimental? but I am not so sure that is a reason not to trust it. It has been trialed and approved? I’ve seen reports on this site about the high rate of DEXA error and inaccuracy—especially for small boned people—but have not come across similar information questioning the accuracy of REMS. I would be interested in everyone’s thoughts on this. Agree with others on this post—you only have one life ( so they say) live it to the fullest extent possible.
Thank you for your response. From what I can see on the web, there is independent verification of REMS matching DXA in terms of accuracy. Of course, the other advantage is that it can also measure the bone quality which is very useful in helping you make a decision as to what you should and shouldn't be doing!
Those are great results! Happy for you. Can you tell me what country you live in.
You must be delighted with your results! Can you tell us what lifestyle changes you have made? Diet/supplements/exercise? Good to hear positive news!
My lifestyle changes have been radical since I was diagnosed 4 years ago. I'm in the fortunate position of not being restricted physically to what I do and I also have the time:
Excercise: I used to swim a lot, maybe 20/30k per week. That's gone now! Only one session per week. I practice ashtanga yoga and meditation every day and have done for about 15 years. I also now lift weights 4 times a week. Additionally, I have a large dog who needs plenty of walking - maybe 3 - 5 miles per day.
Diet: Massive changes here! I was vegan for a long time but my digestion was never good. I now eat what I can digest which means a mix of keto/paleo/mediterranean - nuts, seeds, a small portion of animal protein (fish or chicken) every day, berries and a ton of green vegetables. I get my calories from avocados, olives, olive oil and the nuts and seeds. I aim for about 3,200 calories per day (an excess of 100/200 calories) which seems to cover all of the bases. No grains, legumes, dairy or eggs - too tough for my digestion.
Supplements: Only two - Raw Calcium from Garden of Life (50% of the recommended serving) an 5g collagen.
Obviously this approach is not suitable for everyone and some may regard it as excessive! But it really works for me.
Thanks, its interesting to see how you have modified your diet and changed your exercise. After years of swimming 3 times a week I am now running and walking lots. I have also started Body Balance and a bit of weights in an attempt to lower my scores and stay healthy. All the best.
I've never heard of REMS. Do you have more info? If DXA and REMS are compatible, I cynically think my endocrinologist uses DXA to establish need to treat me for osteoporosis. T score spine-3.3, up 6% amid diet change, more weight bearing exercise, job change,, Osteostrong, stress management , and unfortunately one yr of TYMLOS.
I was curious about a discrepancy on my DEXA result and wanted some insight about my bone quality, so I had a REMS scan. Like you, I had a better REMS result. I had a fleeting moment of wondering whether it was truly the more accurate scan. It's definitely the more appealing result!
I've discussed the two sets of results with a couple of clinicians. Neither was familiar with REMS scans and even allowed that it might possibly one day be used more widely, but that until there was a robust body of evidence comparable to the long-established use of DEXA, treatment decisions would be based on DEXA. Of course, ultimately decisions about treatment are made by us.
Linnet3 , I'm sorry to hear about the side effects you experienced and can understand that you would question whether that treatment was even necessary. You and Yogi_Bear have such different spine results on the two types of scans. Enjoy climbing those mountains and living your life.
Very interesting information. After very reluctantly agreeing to 2 years of Boniva i.v. every 3 months mydexa was overal 8.75% worse. R hip t score went from -2.9 to -3.3. I'm very small, inly 4'8" tall and have alwaysbeen very active. Hard for me to believe the numbers. Dr wants me to go on Reclast-yearly injection. Just can't do it. Need to research REM and continue exercise. healthy diet, vit d, k and adequate calcium from food. Great information. Thank you everyone.
Not what you're looking for?
You may also like...
silica in it. I also used to take Solgar Silica from Red Algae which seemed to help my nails and...
recently had a dxa scan which has shown osteoporosis. I'm 53 with no real risk factors apart from...
scan in 2017 it showed slight improvement: -2.8 spine; -2.5 femoral neck and -2.8 left hip. I...
How is osteoporosis defined in diagnosis, obviously something showed up in the DXA scan but...
with a three line letter saying I showed both osteopaena and osteoporosis, and that I might, in the...