REMs. Faulty.: I wanted to share this... - Bone Health and O...

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REMs. Faulty.

BoneWhisperer profile image
17 Replies

I wanted to share this because I noticed a lot of enthusiasm for REMs in this forum, but it was very inaccurate for me.

I was recently very confused by REMs. My DXA showed my lumbar had gone from -3.6 to -4.7 in a year. I booked REMS. It said my lumbar was -0.9. My femur on DXA is -3. On REMS only -1.3. Obviously these are huge differences. I also got a second DXA at a different clinic to confirm, and it was similar to the first DXA (done 2 weeks apart).

The reasons I think REMS is wrong are because the DXAs agree, and agree with the 1st one I had a year ago which showed -3.6. Also, I already have a 25% compression fracture in L5 (how would that be possible without an acute trauma, which I haven’t had, if I didn’t have osteoporosis?). Finally, on three different x-rays it was stated I had low bone mineral density, the final of the three being the one where a DXA was recommended. How would that have happened if my BMD was normal? It wouldn’t have.

A caveat is that I am a 6’2”, 43 year old male and REMS is barely studied on us, if at all. Even the fragility score study — which has a lot of conflicts of interest — capped the tallest man at 5’10”.

I know all too well how devastating a bad DXA can be, so I’m sorry to say I suspect REMS is giving some people a false sense of security. Maybe it’s accurate for some people, but not for me. I understand the motivation to believe the more positive number, but I believe being realistic will help the most when deciding on drugs, etc.

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17 Replies
Fruitandnutcase profile image
Fruitandnutcase

You may have a point regarding your height - did you discuss that with the operator?

As far as I am aware you can’t reliably compare DEXA scans done on different machines with different operators even if they are done within two weeks of each other.

Apart from calibration of the DEXA machines so much depends on how experienced the operator is, plus how the operator positions you on the machine and interprets their findings.

My REMS scan results were fairly similar to my DEXA scores and I like how they show bone strength which a DEXA doesn’t show.

I would say if anyone has got as far as having DEXAs or REMS scans then it is important NOT to have a false sense of security whatever the results and it is important to do everything you can to help your bones.

Met00 profile image
Met00

That's a huge difference between your DEXA and REMS scores and I can see exactly why you doubt the REMS results. Can I ask who did your REMS scan? Did you ask for an explanation of such a huge discrepancy with DEXA? What did REMS say about your bone strength and what FRAX score did it produce? It is still possible to have a fragility fracture, even with normal bone density, because density and strength aren't necessarily related, but in that case I would expect your REMS to have shown reduced bone strength.

MWZ3 profile image
MWZ3

You’re putting the emphasis on bone density but what about your fragility you haven’t mentioned those results from the REMS. You’re a youngish male which is different again from most people who are female. My husband is elderly and his bones are supposedly those of a 30 year old according to DEXA. We’re getting his REMS done too mainly out of curiosity but to help the science and studies the scientists are doing.

You’re right about very few studies done on males of any age. I’m curious as to why you’ve sought out bone checks as youngish and male. Have you had some indication of an issue?

Both my husband and I have osteoarthritis and I have other issues in my back which would prevent a correct reading from DEXA and also it does not read fragility (strength). My husband is 82 this year and I am 80.

CloudyD profile image
CloudyD

Hi.

Thank you for your post. It's certainly food for thought. When I'm next due for checks I was going to get a REMS and probably still will, but I'll be sure to have a DEXA too.

Please post any more info that you get about why the results are so different when you obviously do have a problem with your bones.

Meantime, hope you get them sorted as best can.

restlesspegs profile image
restlesspegs

I agree entirely and have had a very similar experience with REMS vs DEXA + a hip fracture which obviously points to the DEXA being the more accurate. REMS was trained using DEXA results, after all.

In my experience, people are not open to criticism of REMS and are much more happy to bury their heads in the sand. People are often quick to point out that discordance points to an inaccurate DEXA, despite it being a common occurrence in the literature.

The credibility of REMS is sometimes overstated with claims such as NICE endorsement, based on mere mentions in research papers rather than formal approval or recommendation.

DEXA is the gold standard. Its reliability and accuracy have been established through extensive research and clinical practice. Until that changes, I'd put very little stock into REMS. We need to make informed decisions based on the best available evidence. Preference bias means that people are instead simply believing the technology with the best results.

Rems profile image
Rems

I thought the whole point of REMS was the fragility score which gives the likelihood of fracture and not so much the T score. If the fragility score was in the red or yellow zone then REMS did its job. If in the green zone then there was an issue. Without this information it's impossible to comment on validity.

Janey716 profile image
Janey716

Thank you for posting. I will follow this thread with interest.

99real profile image
99real

Your experience does provide food for thought. What was your fragility score and in what color of the graph do you fall? As for me, my DEXA scan was faulty but three doctors didn't notice that there was at least a standard deviation between high and low scores. In that case you throw out the lowest scores. The doctor overseeing my REMS immediately noticed the issue. Once the lowest scores were dropped, my DEXA and REMS results aligned fairly well. I think that is one problem with DEXA; if it isn't calibrated right or the person isn't positioned properly, the machine still does its thing, and most providers aren't educated enough to look past the scores that the machine spits out. REMS won't take an image if there is something not right (I didn't get a score for one of my vertebra). I hope you have a good discussion with the REMS provider to enable you to get enough information to understand the differences in your scores, and determine if the REMS let you down. I wish you well as you navigate this health journey.

CKDnomore3953 profile image
CKDnomore3953

Here is a PubMed article, published in April 2023, about a study of 1989 men and women who were followed for 5 years to assess the accuracy of Fragility Scores (FS) on predicting subsequent bone fractures. REMS and DEXA were compared and the REMS FS score was found to be a more accurate predictor of the probability of future bone fractures for both men and women.

pubmed.ncbi.nlm.nih.gov/367...

DEXA scores are based on comparison with average BMD for 35 year old women. It seems logical (since men have sturdier bone structure due to their larger size) that when men are given a DEXA scan their results should be compared with BMD for 35 year old men…but that data has apparently not been compiled yet.

HappyGranny55 profile image
HappyGranny55 in reply toCKDnomore3953

Note the disclaimer at the end of the article. Conflict of interest?

My REMs and DEXA are completely flipped, with low lumbar and good femur on dexa and both reversed on REMs with an abysmal FS for both. Just more info to figure into treatment choices, but flaws with both systems. Can’t cafeteria-pick which parts we like and which we don’t, even though I would love to believe my spine will not crumble like dominoes!

pigeonCl-HU profile image
pigeonCl-HU in reply toHappyGranny55

Yes Granny, I agree with you, this "Conflict of interest statement" says it all.

This was the first thing I checked. Therefore didn't pay much heed to the results of this 'research'. I mean, some of the authors having shares in Echolight Spa....yeah right....

Foodie2shoes profile image
Foodie2shoes

Thank you so much for your honesty about the discrepancy between the REMS and the DEXA. I know someone who had the exact opposite results. Her DEXA indicated mild osteopenia and the REMS indicated she was definitely osteoporosis, but that her bone quality was good leading to a low fragility score. I think that bone quality detection is something to consider. It's discouraging to have so much confusion around the diagnosis and treatment. I guess we all just have to ask as many questions as possible and follow the path we think right for us. I hope for good results for you.

FrogLeg profile image
FrogLeg

I have some preliminary thoughts on REMs. For myself (and perhaps others), I've done some research and I still don't understand it in depth enough to properly assess it. I also have not found enough information about how operators can make errors (which is related to understanding the technology itself).

The descriptions I have seen so far about how it works tend to be high level. Ultrasound waves of a certain frequency are aimed at bone tissue through the abdomen. Reflections are captured. The distortion in the frequency spectra of the reflections tell us something about the health of the bone. Various scores are generated. Some are roughly equivalent to statistical T-scores and Z-scores that we would find from a DEXA. There is also some sort of bone fragility or quality score. The assessment of bone fragility or quality is made by comparing the frequency spectra of healthy to unhealthy bone data from a data set.

We need to know far more specific information. Do lower frequency bands penetrate the cortical layers and when reflected represent the trabecular bone lattice structure? Are higher frequency bands suggestive of cortical thickness? Do reflections occur in a uniform distribution across the depth of the bone tissue? What exactly do we know about the data that we collect? If all we have are high level studies that shroud the details of how the technology works, then we can't critique them well. It becomes a black box and we can't discuss designing more careful experiments to deduce and correct issues with the technology. It's all transparent.

Similarly, with regard to operator errors, if we don't see specifically why data captured from individuals is sometimes excluded/discarded, we can't assess the validity or quality of any particular report we obtain. There should be a clear, itemized list of rejections and how they were arbitrated. Otherwise, we are left in the dark. We can't adequately postulate what might have gone astray in any particular scan. With DEXA, we know enough to know how it *can* go awry (even if we don't know in any particular case if or why it *did* go awry). With REMS, it seems far more fuzzy and hidden. Maybe you can help me find more precise and carefully presented information. I've written authors of studies looking for this sort of info to no avail. They don't respond.

For both DEXA and REMS, based on my present limited knowledge of each, my sense is that we cannot confidently use either for individual assessments or decision making with osteoporosis. In both cases, their value is demonstrated in large scale studies. You will find trends in the data in aggregate. But it is an entirely different game to try to take a particular individual and make an assessment based on their reports. The safeguards to clearly identify or avoid poor data capture don't appear to be adequate.

karmel profile image
karmel

When I had a REMS scan my weight was entered inaccurately,. My weight was 44 kgs and was inserted as 47 kgs which meant that my BMI was not right. It could not be rectified as I didn't know until I received the REMS scan results.

Smittybear7 profile image
Smittybear7

following

mollysuki profile image
mollysuki

Also following as it’s an interesting subject. The cost of having a REMS scan is expensive which a lot of people cannot afford. I have tried to find out how they measure bone strength but have been unable to find information on how this is achieved.

MyCatsNameIsMouse profile image
MyCatsNameIsMouse

where did you have your REMS?

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