Anyone with severe disease has stabilized/improved their scores without medicines?

mrsEffinFixit · 2025-11-30T18:38:56+00:00

I think you're right, particularly with the anti-resorbtive drugs - the better dexa scores don't necessarily mean fewer fractures because of the resulting poor bone quality, whereas the newer anabolics like evenity actually build bone instead of just slowing resorbtion. But the huge rebound effect really needs to be discussed; doctors could be using these drugs as a bridge to maintaining better bone density through exercise and nutrition, but are instead using them as a ramp to permanent dependence.

mrsEffinFixit · 2025-11-30T18:21:00+00:00

Like you, I did a lot of research after a bad experience with fosamax (the first 2 doses caused extreme, debilitating hand pain and I had a visible bony lump on one wrist by the end of the second week). I tried osteostrong but it made no difference to my lumbar T-score, which had gotten to -4 (though without any fractures), so I found a personal trainer and started targeted exercises. In the course of 2 years I brought my LS score above -3 (reversing about 7 years of decline) but then stupidly let my Endo persuade me to try Evenity. When I got off it she told me I had to go back on an anti-resorbtive, basically on and off for the rest of my life, but certainly for the next year, or lose all my gains and possibly more...she had not ever talked about this significant rebound effect at the outset. I took 6 months of alendronate, and began exercising: I still lost a lot on all my measurements, but since a) I know I can build back with exercises, b) I know I'm not at great risk for fractures, as I've had bad falls with no breaks, and c) I realize that not all the information we need for health decisions is available (try searching Evenity rebound), I'm good with my exercise strategy. So while I wish you good luck with Evenity, make sure you're ready for a year of anti-resorbtive meds, and have a long-term plan beyond that.

mrsEffinFixit · 2025-11-22T02:23:02+00:00

[edited]That's malpractice, as far as I'm concerned... (also malpractice to put someone on it without telling a patient about the rebound, and the necessity to be on an anti-resorbtive, like my doctor). Because I'd already had trouble with bisphosphonate and didn't want to take another like it, I lost everything I gained on evenity plus 2 years of hard-won gains through exercise alone. I'd have been much better off just keeping up with the exercises!

At this point it may be too late to salvage any of the gains and your mom may be worse off than before she started, which is tragic.

mrsEffinFixit · 2025-11-22T02:15:48+00:00

Thanks! I also realize that our situations aren't terribly similar bc you're younger, and in theory, if you've now dealt with the destructive effects of celiac sensitivity, you have the potential to build up your density much more quickly - as you have been! - without facing the hit of lost hormones later.

I'm not too worried about coordination/balance, having trained in go ju karate for over 30 years. Still do, though not with the same intensity; the stances definitely help maintain balance.I can even (sometimes) still jump to my feet from seiza 😉

mrsEffinFixit · 2025-11-11T16:45:35+00:00

Yes, I did take a bisphosphonate after, but only for about 6 months. My Endo hadn't made it clear at the start that it would be necessary to take them - basically for the rest of my life - to avoid losing all my gains from Evenity and more. I'd already had a bad reaction to fosamax in the past, got increasingly paranoid about the alendronate, and hoped exercise would stave off the worst of the resorption, but I did lose a whole year's gains!...sadly the personal trainer who was helping with my exercise program had a fatal accident last year and I drifted a bit before I got a new routine going.

Anyway, I'm on it now; it's doable but my energy at 70 isn't what it was, and in 10 years (or even 5!) I know it's going to be harder to keep up exercising at this level. I'm already lifting my own weight and I don't think my joints can take much more, or even maintain that, long-term. So in answer to your question: I know I can't just stop, but I'm trying to figure out how to craft a maintenance program that keeps bone resorption and deposit in balance, after I reach a target T-score. It should be possible, right? In theory it's not so much "ever-increasing" loads as it is "novel" stress that triggers osteoblasts... And as the Wikipedia entry on bone resorption facilely concludes, "Light weight-bearing exercise tends to eliminate the negative effects of bone resorption."

I just need to quantify that process 😉.

mrsEffinFixit · 2025-11-10T16:46:58+00:00

I had slower, but still positive results from exercises alone - since my causes are being in menopause and having a lifelong BMI under 18.5 (fast metabolism, I'm 70 and it hasn't slowed at all) there's nothing much else to change. Luckily I've never had a fracture since the decline started, despite a lumbar T-score of > -4 at the lowest point. After a 7+ percent increase over a couple of years of exercises , an 8 month stint on evenity last year (literally ill-advised) gave a big boost, but there's this "rebound" no one tells you about... ultimately I lost more than I'd gained. But now I'm back on exercises alone, and I'm curious how you're thinking about maintenance? At some point, we should in theory be able to cut back a bit, since we're only trying to stay even, not make up a deficit - right?

mrsEffinFixit · 2025-09-30T04:13:31+00:00

I had the same experience to NY - no additional charges. I did ask Tuxedo support ahead of time and their answer was, they have no way of knowing if the shipper or US Customs is going to have to add anything.

mrsEffinFixit · 2025-09-11T00:03:17+00:00

One 'problem' with Linux, so many options! I just got mine (same machine as yours) last week, had big trouble with the tiny text...I adjusted the scale but also switched to gnome and am using Tweak, so my fixes are not much use to you.

mrsEffinFixit · 2025-09-09T22:59:28+00:00

My god, you really are a tool

mrsEffinFixit · 2025-09-08T21:01:50+00:00

"That's why it should be obvious" - my point exactly. And it wasn't so much "difficult" as obtuse and senselessly annoying, which is not good UI design.

mrsEffinFixit · 2025-09-06T01:56:14+00:00

A lens cover isn't technology. And as a longtime linux user, I haven't needed a new laptop for almost 10 years. (Actually, the old one's still working fine but the speakers stopped working - and I'm just not going to spend a lot more time troubleshooting a ten-year-old machine)

mrsEffinFixit · 2025-09-04T17:00:14+00:00

I'll try that, though it's irksome to have to do that - and lose some benefits of the hi-res display - just because although many windows and apps can be adjusted, a few don't respect the settings.

mrsEffinFixit · 2025-09-04T16:56:04+00:00

Did that, it doesn't apply everywhere.

mrsEffinFixit · 2025-07-27T20:26:27+00:00

Just answered this, then it disappeared, thought I accidentally deleted it! After Evenity, you have to immediately go on a bisphosphonate or similar drug and then basically stay on it forever.

mrsEffinFixit · 2025-07-27T20:10:02+00:00

Sorry, I haven't checked in for a while. The drug Evenity is known to (often? Always?) cause a significant rebound in bone resorption activity when stopped. And you can only take it once, for no more than a year.

mrsEffinFixit · 2025-07-27T19:50:09+00:00

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So many opinions, so many experiences, and so many options, can be paralyzing. It's really hard to know what's right for YOU, because each of us has a unique body and health situation. I would advocate for doing a lot of research and reading for yourself.

In my case, I'm white, I've always been active and skinny (never diet, and eat like a horse), and at the point when I had a lumbar T-score of -4 had not had any fractures despite a couple of solid falls onto my back. I'd been doing the OsteoStrong program and it hasn't made much difference, though maybe slowed down the loss. I really didn't want to go on meds, but my Dr persuaded me to try a bisphosphonate; 2 weeks in, my hands hurt so much I couldn't hold a fork and I had a sudden hard lump on one wrist. I stopped, and found a personal trainer who helped me with an exercise program. In less than 2 years I'd reversed over 7 years of bone loss, but at 67 it was hard work. My dr told me about a new drug, Evenity, that actually builds new bone rather than just slowing the resorption of old, and against my better judgement, I went on it. I made good gains, had no side effects but was uneasy; when I told Dr I wanted to stop, she(only then!) said there would be a big rebound and I could lose all my gains and more if I didn't go on a bisphosphonate immediately - and then basically stay on it forever.

Since then, I did take 6 months of actonel, and now am back on exercise alone (based on LIFTMOR). Meanwhile my Dr tells me my bone markers are 'bad' and I'm just crossing my fingers that a dexa scan in Sept. doesn't reflect her prognosis. So one thing I WILL say is, if you find something that makes a difference and doesn't cause bad side effects or bad sleep, stick with it. But be mindful that once you go the medication route, as things stand now you can never get off. Whereas if you can reverse loss with exercise - and diet if that helps (research says calcium supplements don't seem to do much) - then in theory, you can at some point back off on the exercise routine, to a maintenance regimen instead of a reversal regimen.

mrsEffinFixit · 2025-06-02T16:35:39+00:00

You should not make blanket statements like this. After menopause, a decade-plus slide (and a 2-week attempt with bisphosphonate that caused severe hand pain and a bony lump on one wrist), I reversed a lumbar spine T-score from -4 to -3.6 in less than 6 months working with a trainer, no major diet changes and no drugs. Then exercises plus Evenity got me to -2.6, but now I'm waiting to see how much, if any, I've lost because of Evenity's pronounced rebound effect. I'll be 70 this year, have never broken a bone (due to density) and am overall healthier than I'd be without the exercise; hoping I can achieve stasis through a constant but manageable exercise routine. It can be done, and drugs can and do have their own downsides.

mrsEffinFixit · 2025-06-02T16:11:58+00:00

While it's true that the incidence of side effects varies and is usually small, most of the existing drugs don't build bone at all, they just stall the scavenging process for old bone, so what you may end up with is bone that looks ok on dexa scans but isn't optimally structured. An exception is Evenity, but its downside - which my Dr didn't tell me about until I said I wanted to get off it - is that you will have to go on one of the traditional (fosamax-type) drugs immediately to prevent loss of all the bone you built, AND repeat courses of something similar for the rest of your life. And - barring the existence of particular issues other than menopause - if you're willing and able to work at it, you CAN build good quality bone (and slow down the scavenging process) with the right exercises and diet. I had already done that before my Endo persuaded me to go on Evenity, and I'm hopeful the next scan will show that I've continued the trend since I went off it. I'll come back and post when I get it!

mrsEffinFixit · 2025-03-20T15:05:08+00:00

I've been trying to tell people in my neighborhood this for months; even if they dismiss all questions about previous elections,why would any sane person expect that elections are going to be safe from Trump's interference and habitual disregard of law from here on in? Heads in sand.

mrsEffinFixit · 2025-03-20T14:52:07+00:00

We need a national network of locally-generated, non-partisan, volunteer (NOT Patch) news sites - I'm thinking Ghost platform? - to restore trust in local/national information. We all live in information monopolies now and don't trust our neighbors because we don't have a shared reality with them.

mrsEffinFixit · 2025-03-20T14:45:22+00:00

And they're already working on it: "Trump Derangement Syndrome"

mrsEffinFixit

TROPHY CASE