How many people are taking osteoporos... - Bone Health and O...

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How many people are taking osteoporosis drugs without even being osteoporotic?

MWZ3 profile image
MWZ3
26 Replies

Just back from an echo light scan and the results have shocked me. I’m not osteoporotic and never have been. Dexa scan consistently advised I had severe osteoporosis. Results today are as follows:

Hip: -.9

Back

L1: -1.3

L2: -1.2

L3: -1.6

L4: -1.5

To say I’m amazed is a massive understatement.

Before you proceed with the drugs for osteoporosis make sure you even have osteoporosis. The Dexa scan won’t be right.

Doctors and specialists have consistently pushed the drugs at me.

There are other reasons you break bones.

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MWZ3 profile image
MWZ3
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26 Replies
uncountable3 profile image
uncountable3

If DXA scans consistently report osteoporosis, I am inclined to believe that it is the REMs scan that is wrong. While DXA errors certainly occur, they are normally associated with variability. While REMS is immune from some issues that plague DXA, it is vulnerable to some that DXA is not.

MWZ3 profile image
MWZ3 in reply to uncountable3

Osteoarthritis masks Dexa scans. The probe used for REMS is pushed onto the site and for the hips area the neck is used so you have two to compare and they should match like .8 and .9 on my hips. The back L1, L2, L3,L4 should be as well. Mine were between -1.2 and -1.6. The differences when I had the Dexa done were huge differences which is not possible as they’re all your bones. Bones in one area can’t be too different from bones in another. I was there for over an hour and he was very thorough. The Dexa scans were always really fast with no discussion. Yesterday, there was a lot of discussion, information and explanation. He was interested to do m6 husband’s bones as he ha# few elderly gentleman for his research that is ongoing. He advised me what to do which was great.

Frodoles profile image
Frodoles in reply to MWZ3

I wouldn't doubt for a minute that your Osteoscan is correct. Having been told since 2009 that I had osteoporosis my Osteoscan revealed I only have Osteopaenia! Whilst relieved, I also felt angry. Why? Because all that time I refused all the prescriptions that supposedly would help me! But it made me wonder how many people have been taking them when they didn't need them. I wasn't placed on the DEXA scan table accurately. My height was wrong. The scanner was changed midway. So these things contributed to the erroneous reading. I will never have a DEXA scan again.

MWZ3 profile image
MWZ3 in reply to Frodoles

I worry that there are millions of women especially around the world on drugs they should never have been put on. The DEXA machines were brought in by big pharma and paid for by them. It took a long time before they knew or disclosed you just can’t go off the drugs.

HeronNS profile image
HeronNS in reply to Frodoles

I was told (2015) I had osteoporosis because my GP thought that's what "low bone mass" meant on my report (which didn't include t-scores btw). I did more research and also insisted on knowing my t-score which was oddly hard to obtain and also learned that "low bone mass" was their term for what is generally known as osteopenia. They recommended drugs because of several risk factors but I've never taken them and still here, still fine (touch wood) although work hard at staying healthy!

wellness1 profile image
wellness1 in reply to uncountable3

While REMS is immune from some issues that plague DXA, it is vulnerable to some that DXA is not

What would you say are the issues to which REMS is vulnerable but DXA is not?

uncountable3 profile image
uncountable3 in reply to wellness1

One that I am aware of is that REMS will overstate density in the presence of abdominal gas. I have IBS so this concerns me. BTW you are right that osteoarthritis affects DXA results but it causes density to overstated, not under. Another DXA issue is understating the density of small bones. Sense REMS also reports g/cm^2 it would seem REMS also has this 2D vs 3D problem.

Met00 profile image
Met00 in reply to uncountable3

Please will you provide a source for this issue with REMS scans. It isn't something I've heard of before and I haven't found anything through Google.

uncountable3 profile image
uncountable3 in reply to Met00

I probably read it on Inspire. This article isn't the best but it does mention the concern: mp.pl/paim/issue/article/16... Unfortunately, the bulk of the returns from a Google search for REMS are essentially advertisements. Pubmed would probably be better place to search.

Met00 profile image
Met00 in reply to uncountable3

Thanks very much, that's a really useful and interesting study.

Met00 profile image
Met00 in reply to uncountable3

I've enquired about the need to fast before a REMS scan and been told the following, a message from Dr Birch who does the scans via his assistant: "The paper is correct that gas in the bowel will prevent ultrasound "seeing" some parts of the spine, but to eliminate gas in the abdomen a person would probably have to fast for several days as the gas in question is mainly in the colon, rather than the stomach. That takes time to disappear so fasting isn't really practical".

I would add that there has been a considerable amount of research, comparing REMS to DEXA, with plenty of evidence that they produce similar results when done properly. However, DEXA is more open to errors than REMS, due to REMS being more fully automated. The question I always ask about DEXA is how you can possibly rely on the results if you can't compare scans done on different DEXA machines. If they give different results, how can you tell which one, if any, is correct?!

wellness1 profile image
wellness1 in reply to uncountable3

It was  MWZ3 who mentioned osteoarthritis. :) Thanks for your reply and the study you linked. Very interesting. I'd never heard about fasting before REMS scans. I note the authors stated:

Only 23.4% of all erroneous reports in the femur group and 20% in the lumbar spine group were excluded due to REMS errors. The remaining reports were excluded due to DXA errors, primarily incorrect data analysis.

Frodoles profile image
Frodoles in reply to uncountable3

Where are you quoting this info from? The one thing you haven't mentioned is bone strength. The DEXA scan only comments on bone density and that is NOT bone strength.

MWZ3 profile image
MWZ3 in reply to Frodoles

I know you’re not replying to me but I was surprised to discover that there are two components needed to be understood. One is density, the other is fragility. I don’t have osteoporosis and don’t need the drugs but my bones are fragile. The scientist who did the tests on my bones said what he advised his mother is to use a Walker to avoid falls. She’s a few years older than I am and her bones are even more fragile.

uncountable3 profile image
uncountable3 in reply to MWZ3

Even if we take your REMS scan at face value, you could still have osteoporosis because osteoporosis can happen even with fully normal bone density. It is not the common situation but it happens and some of the osteo drugs, notably anabolics are appropriate for this case.

MWZ3 profile image
MWZ3 in reply to uncountable3

No. I’m happy with the result. The dr who did the tests said I’m not even eligible for the drugs. If I’d thought any of the drugs were a good idea I’d already be on them never able to get off. I’ve resisted taking the drugs for ten years and glad I’ve done so. You’re free to make your own decisions based on your research assuming you know how to research. When you do post grad study that’s a component learning how to research scholastically. Googling isn’t research. Peer reviewed studies is most valued so look at those. I’ve been researching for ten years. People’s experiences on here are primary source materials. Not their opinions but their experiences!

99real profile image
99real in reply to uncountable3

I was instructed to fast before having the REMS scan for just that reason, to avoid gas. BTW my REMS results were better for my spine than my DEXA; osteopenia v. osteoporosis. The speculation is that the either the DEXA technology or the technician couldn't cope with my rotated hip and vertebrae. The orthopedist reading my DEXA scan said that the lowest two numbers should have been thrown out because there was more than a standard deviation between the high and low scores. There seems to be problems with medical providers setting up the DEXA scan for success and being able to properly evaluate the images (I had read a book by Keith McCormick, a chiropractor, that mentioned the standard deviation issue, but three doctors I saw before the orthopedist didn't see it as a problem).

MWZ3 profile image
MWZ3 in reply to uncountable3

betterbones.com/bone-health...

MWZ3 profile image
MWZ3 in reply to uncountable3

betterbones.com/bone-health...

Nightingales profile image
Nightingales

I have this conundrum at the moment.I have been on steroids for seven years with relapsing PMR. My rheumatologist spends most of my appointments telling me I should be on the drugs for osteoporosis but refused to order a Dexa as he said I would have osteoporosis anyway. So 7 years ago I had a private DeXa which reported a fracture risk and recommended the drugs. So I went on Alendronic Acid and was immediately allergic to it with hives, severe rash. I was reluctant to go on the other meds because I have poly pharmacy and the side effects are worrying. Skip forward seven years and I am still fighting PMR. I took HRT as a bone protection.

I decided to have a REM. The results came back that I am not osteoporotic but have frail bones and the consultant recommended a different kind of bone building drugs. My rheumatologist ordered a DEXA scan and said the results showed osteoporosis and recommended starting me on Alendronic Acid. My allergy is in red all over my notes! So I am stuck between an incompetent rheumatologist and the REM consultant.I guess I will have to get a second opinion privately. I am tempted to leave it to fate but I have already had a hip replacement for Avascular Necrosis

I am in the UK. Apologies for the long post..

HealthELiving profile image
HealthELiving

You are fortunate. My DXA scan showed only borderline osteoporosis in 1 hip and the rest was clean. I went for a REMS scan in NC and my results were opposite. spine was -3.1, hips were about -2.8. I'm pretty miffed of years of misdiagnosis by DXA scan operators when I could have been advised to improve bone density. Of course I'd love to believe that the REMS scan is off, but it is highly unlikely. Your point is a good one but the opposite is also true.

MWZ3 profile image
MWZ3

On the way home yesterday my husband said he bet that big pharma is behind the DEXA push as so many people are pushed onto drugs that I consider very iffy. Well, just found out they instigated the DEXA machines in the beginning. Only recently has it come out that you just can’t go off the drugs which says to me they were begun without thorough research or even common sense. Just stick everyone on the bad drugs and find out the bad stuff later. I was never going on them with so little information and many years passed with no fractures. Even now, turning 80 I’ve had only one that I know of for sure and I was not aware of it. My bones are fragile but not due to osteoporosis. The drugs wouldn’t help or be recommended. I’d recommend the echo light before proceeding with the drugs. I’ll stay on the K2 and make sure I have enough calcium and a diet that looks after my bones.

HeronNS profile image
HeronNS in reply to MWZ3

The little heel tests which they were doing in drugstores some years ago, pretty useless apparently, were deliberately distributed and the tests done to get patients primed to accept the idea of taking OP medications. It's criminal really. Much better approach, without pharma involvement, would be to teach younger adults (ideally before midlife) how to keep their bones strong and healthy!

MWZ3 profile image
MWZ3 in reply to HeronNS

Our thoughts exactly! We left the echo light place the other day and my husband and I agreed that it was criminal, a scam by big pharma, to put millions of people on drugs they probably don’t need. When I was diagnosed with crohns about 17 years ago I was put on massive amount of hydrocortisone which likely made my bones fragile to save my life as I’d stopped eating and drinking. Fragility is not density apparently and with old age we become fragile. I haven’t lost height interestingly.

montieth profile image
montieth

They pushed the drugs on me when I only had osteopenia also! There seems to be more pushing of drugs earlier for many conditions. Also, I even had a doctor recently suggest I take chloresterol drugs even though mine is normal. She said it might benefit me and prevent problems. This is like a preemtive bombing on a country to "deter" them from an attack.

HeronNS profile image
HeronNS in reply to montieth

Those anti-cholesterol drugs aren't useful for women who have no known cardiovascular conditions anyway, and I think the jury is out on whether they are much good for the men either, although don't quote me on that.

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