I’ve seen his posts – something he wrote about T-Scores is actually what triggered me to start questioning the predictive value of FRAX and whether a person like me with -0- fractures & no risk factors should even be considering medications based on T-Scores alone.
I realize that doing nothing and waiting for a fracture to happen is NOT a good plan… but I also don’t think it’s a good idea for me as an individual to be prescribed medication based simply on risk projections on a chart. Dxaguru had one post where he said that the FRAX score is like Las Vegas odds – that for any individual patient the odds are either 0 or 100% (you either get a fracture or you don’t, whenever) — though my personal concerns is more along the lines of looking at things like overall physical strength & risk of falling.
Even your DEXA scores aren’t bad, right over the line. I wish I had done more when mine were at that point! (Though I couldn’t do anything about the effects of my cancer meds.)
The thing is, you can only take biphosphonates or Prolia for 5 years due to risk of atypical fractures. And, again, those interfere with Tymlos and Forteo’s effectiveness if you end up taking those. And if you do take those, you are supposed to take other meds to maintain. The years add up way past the 5.
There are so many factors that contribute or prevent fractures. I think you are approaching this very wisely.
Thanks, I really appreciate your very supportive posts! Part of my problem is that I really have no clue what the bone density numbers mean in real-world, functional terms. But I do know that when I read the DEXA report summaries it makes me feel fragile & weak, but when I go to the gym and work out on the weight machines, I feel like superwoman.
I have an app on my phone called “Jefit” which lets me track everything I do at the gym- so for example, I can see that on Wednesday I worked out for 36 minutes, used 6 machines, and “lifted” (or pushed/pulled) 13,900 lb. total. (So that’s almost 7 tons! - see why I feel so powerful? Of course, they get that by adding the reps and that was a “leg” day at the gym – my upper body work is not as impressive – but that’s why I feel so much happier with the gym-rat approach vs. a medication-based approach.)
And I agree with what you wrote about the time limitations of the biphosphonates – starting the drugs now could really limit my options down the line when I am older and fracture risk much higher.
I was puzzled by the apparent standard for treatment of the threshold for medications being a 3% ten-year hip fracture risk — it didn’t make sense to me because FRAX puts me at 3.5%, but if I divide by 10, that would mean that I have a 99.65% of not having a hip fracture in any given year – particularly for the near-term years, as I know that risk goes up with age.
But now I have learned that number is NOT something based on medical evidence geared to individual need, but rather comes from a population-wide calculation of cost-effectiveness of treatment. So that’s something for public-health systems and insurance companies to worry about – since obviously, it is a lot more expensive to treat a hip fracture than to prescribe biphosphonates and do a DEXA scan every other year.
Or to put it another way, it makes financial sense for Medicare to pay for the biphosphonates, especially the cheap generics, at this point… but that doesn’t mean that it makes sense for me to take the meds now. I found out that there’s a medical concept of “number needed to treat” (NNT)-- here’s an example of how the numbers play out from a meta-analysis of alendronate (generic Fosomax) among 12,000 women:
Fracture in the hip or wrist
‐ 2 out of 100 women had a fracture when taking a placebo
‐ 1 out of 100 women had a fracture when taking alendronate
(I don’t know why that study lumped hip & wrist together – I have not lost one second of sleep, ever, worrying about breaking my wrist. But in any case, it’s hard for me to see myself as the 1 out of 100 who will have a fracture that would be avoided if I take the meds).
The numbers are more significant for spinal fractures – that seems to be where the biphosphonates are more effective - (“12 out of 100 women had a fracture when taking a placebo / 6 out of 100 women had a fracture when taking alendronate”) – but my spine numbers have either improved over two years, or held steady, depending on what that mysterious least significant change value is. (I’m about 99% certain that spine improvement is well within margin-of-error --but either way it seems to suggest that the gym-going is working. If the pattern was different – if my femoral neck was the same or slightly better, and my spine was 5% worse, then I would be a lot more worried.)
I used to do all this research (in fact one of my books was “The Myth of Osteoporosis,” which I did not agree with entirely but had some reassuring viewpoints.) Your research is helpful and may be reassuring for folks…
Doctors have protocols but one wonders how much or a role the pharmaceutical companies have in creating them. (And I appreciate Big Pharma more than most, meds have saved lives in my family).
I would think your scores give you plenty of time to try to stabilize, without meds. A couple of small points: as you have probably read, femur neck scores are not reliable for measuring changes in density.
Also, I don’t really know, but I would be careful about lifting a lot of weight. (I had a spinal fracture due to a traumatic fall before osteoporosis, and am not actually able to lift, which I actually credit for my avoidance of fractures in the last 14 years since diagnosis).
Sitting here in my living room, I feel extremely fragile. But Tai Chi makes me feel like a “superwoman.” I even do a sabre form, moving across the floor with large swings of a heavy (for me) wooden sabre. Woo-hoo!
I am considering buying hip pads if I still cannot tolerate Tymlos. Another non-medical approach. Maybe I will look like Kim Kardashian in the behind but I won’t break a hip falling
I don’t lift free weights at the gym, just work with machines and Margaret Martin’s website has some great advice as to proper form and which machines to avoid. So those numbers in the app are all reflecting things I am doing in spine-safe positions. No way would I try to deadlift heavy barbells.
At home I have dumbbells… so there was a new Margaret Martin video in my feed this week and I learned how to do a chest press with my 8lb dumbbells while lying on my back with knees bent… so again, pretty safe for my spine.
Anyway, those weight numbers in the app are based on machine weight settings. Pre-covid-year, I could do 200lb on the leg press, but that is me sitting on my butt and pushing a platform on a track with my legs. I’m taking it easy as I start fresh after a year, so I set the machine lower for now, but the point is that I’m unlikely to hurt my spine pushing weights around with my legs.
I’d love to see that new video, is there anyway you can link it here? I’m going to start back to the gym in April and would love guidance on what weight machines to avoid. She has so many DVD’s and products I’m not sure which to purchase. Do you own any of her products, and if you do, what would you recommend?
I bought the “Better Bones” books (Exercise for Better Bones, Yoga for Better Bones) – but I don’t really feel they offer that much more than you can find on the website. I do recommend the free series you get when you sign up for the email list – that provides a great introduction & overview. Here’s the new video I mentioned – Exercise for Osteoporosis, Osteopenia & Strong Bones - YouTube
I don’t have a source, but it does say on my radiology report" the total hip and spine are the most reliable indicators of statistically significant change"
I’m getting ready to reinstate my gym membership now that I’ve had my vaccine. What machines are best for actual building up bone density, especially the lumbar?
Here’s a link to Margaret Martin’s videos about gym equipment:
(You can click on the 3 little horizontal lines in the upper right to see the full gym playlist):
I can’t say what is best, but here are the machines that I do at the gym for upper bodywork. (Maybe my spine improved over 2 years? DEXA scan for lumbar spine went from -2.9 in 2019 to -2.7 in 2017, but it was less than a 3% change overall so likely within the machine margin of error … but in any case, the spine hasn’t gotten worse – and I felt absolutely great after my last workout!) I don’t do everything listed here in one session – I’ll do 5 or 6 machines and then on my next trip to the gym try to start with whatever I missed at the end of my previous workout. But sometimes it depends on machine availibility. I also regulary switch up the order that I do machines, simply because I can do more when I am fresh than when I am getting tired at the end of the workout.
Margaret Martin has a video on this, but I do mine differently – at my gym there is a pad on the machine, and I stand with my back up against the pad, so I am standing up straight while pulling down the rope – so this guarantees that I am keeping a straight back.
Front Lat Pulldown
Cable Seated Row
Then I also use the gym Rowing Machine – this is more for cardio and is not weight-bearing, but I feel it is good for building up my back strength overall – and Margaret Martin has a good video on that.
It is really worthwhile to pay a little extra to work with a trainer at the gym if you haven’t worked with machines before. Also it helps me to watch others on machines if they seem to have good form – but of course a lot of the gym goers have rather appalling form.
My gym also has a TRX setup and I use that mostly as a cool down & stretch-- so I’m still using my muscles but in a slower, more controlled way.
My trainer started me out also using a triceps extension machine, but no matter how hard I tried I always ended up hunched forward on the machine - which I knew was bad for my back. I did let her know, and that’s when she showed me how to use the cable rope triceps pulldown with my back against the vertical pad.
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Keep in mind that your end-goal is to avoid fractures – bone density is only a small part of that equation. If we strengthen our back muscles and improve our posture, we are less likely to hurt our spines when we bend down to pick up some object. I live alone and -after I started going to the gym 2 years ago, maybe about 4 months in, I wanted to flip the mattress on my queen bed. I noticed how easy that task seemed compared to the past – so that is one example of the kind of household task that could lead to a back injury but is probably much safer with stronger muscles, whether or not the bone density has improved.
I like to focus on that because there is no way for me to know whether or not my bone density is improving except in hindsight, and my BMD will probably go down with age no matter what – so also no way when I do get a scan of knowing what it would have been without the exercise. But I know right away when my muscle strength is improving – I can log my exercises & track progress, I can feel the changes in my muscles as I work out, and I can observe my improved strength in day-to-day activities.
Thank you SO much for the detailed response and linked video. I’m going to have to write down those machines and take them to the gym! We actually have a rowing machine and I tried it when we got it 3 years ago. (For hubby not me). It hurt my back so bad, obviously I was doing it all wrong, but now I’m afraid of the darn thing!
Yes, the goal is no fractures and I’m going to stop putting myself in the position to fall…like climbing on chairs to do stuff that someone else can do!
My back is already feeling (the muscles) much better and doesn’t hurt like usual just from the Yoga and DVD I bought!
Just keep in mind that the equipment at different gyms varies – so your gym might have somewhat different machines. I’m feeling really good now that I can be back at the gym --I am so energized and I am working my way gradually back to where I was before. Do make sure to start gradually and work your way up on the machines – if you injure yourself while working out, that can put you out of commission for awhile. I’m not even talking about bone fractures, but thing like pulled muscles or tendons.
But I think I’m going to add this to my diet under an “it can’t hurt” rationale. It’s supposed to be good for skin & nails even if it doesn’t end up helping with BMD. And I was thinking more in terms of overall bone quality rather than density in any case.
I’m not taking a collagen supplement yet, and if I do I am probably going with the Sports Research brand. I think I’ll by one jar and do a personal 30-day trial. I started thinking about it because I’m having problems with my nails being brittle and breaking. But these days before I take anything new I always do a little side trip into bone health research. I don’t really care what brand was used in the study. I don’t have any short term way to monitor bone health effects anyway, but I’ll know soon enough whether it helps my skin and nails.
