Even if you increase your bone densit... - Osteoporosis Support

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Even if you increase your bone density, you still have osteoporosis

Mark_ABH profile image
97 Replies

Hi everyone, I was just looking over the updated Clinician's Guide to Osteoporosis and noticed something that bears mentioning on this forum. A lot of users seem to be focused on increasing their bone mineral density as measured by their T-score on a DXA test. American Bone Health recommends you focus on fracture prevention and overall wellness, rather than a single metric like T-score. Here is what the updated guidelines say:

Skeletal deterioration resumes sooner or later when a medication is discontinued—sooner for nonbisphosphonates and later for bisphosphonates. Even if normal BMD is achieved, osteoporosis and elevated risk for fracture are still present. The diagnosis of osteoporosis persists even if subsequent DXA T-scores are above − 2.5. Ongoing monitoring and strategic interventions will be necessary if fractures are to be avoided. In addition to pharmacotherapy, adequate intake of calcium and vitamin D, avoidance of smoking and excessive alcohol intake, weight-bearing and resistance-training exercise, and fall prevention are included in the fracture prevention armamentarium.

link.springer.com/article/1...

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97 Replies
Daisi124 profile image
Daisi124

Thank you for the helpful information Mark. I had suspected that would be the case. It is lovely to be able to come here for advice and any updates and sometimes vent your depression, anger or despair, there is always somebody to lift our spirits or give helpful advice and keep us up to date with anything new.👍

Kaarina profile image
Kaarina

Thank you for this thread. I agree. I declined to take any OP medication and hopefully I can continue in this way. I have been offered the usual, AA, Risedronate and Prolia and the combined calcium and Vitamin D supplement, as this is what doctors do without thinking outside the box. It was me that started a conversation with my GP regarding the fact that I was pretty sure I got enough calcium in my diet and he gave me a questionnaire to complete there and then at the appointment and he agreed. So now he only prescribes Vitamin D. I had a REMS scan last year and was happy with the result and will take another in 2023 and hope I get the same result. I am not looking for a miracle result :) I take the supplements suggested for OP and walk a fair distance daily. I cannot do weight training really as no longer have a rotator cuff in one shoulder but do gardening etc. So far so good. I do daily exercising at home. I have lost height but I have scoliosis so that is more than likely the reason for that and I have not fractured to date. I feel OK and am getting on with my life. I do have falls but so far nothing has fractured. Fingers X'd

HeronNS profile image
HeronNS in reply toKaarina

In fact walking is a good exercise, even sans extra weight! I'm sure the gardeining helps too.

kimmw728 profile image
kimmw728 in reply toKaarina

can I ask where you had a REMS study done?

Thank you!

Kaarina profile image
Kaarina in reply tokimmw728

I am sure it was Milton Keynes - it was nearly two years ago and we travelled quite a way as these REMS scans are very popular so get booked up way in advance.

kimmw728 profile image
kimmw728 in reply toKaarina

thank you. I am in the USA. There are only 5 places that even do REMS imaging here. We are not up to date here.

Met00 profile image
Met00 in reply tokimmw728

On the other hand, if you CAN get a REMS scan in the US, it's officially accepted as a diagnostic tool. Here in the UK we have to pay privately, because the NHS doesn't accept it, and that also means our doctors may not be interested in the results.

kimmw728 profile image
kimmw728 in reply toMet00

we have to pay private for one, too. Most providers in the USA don’t recognize it either. I can’t even get a TBS score on my DEXA scan. (Don’t have faith locally since the last one I had, I was measured as 2” shorter than what I am. I triple checked to confirm I did not shrink!)

Met00 profile image
Met00 in reply tokimmw728

Very very few DEXA scanners give TBS score in the UK either. It sounds like we have similar problems with healthcare in both our countries, despite health systems being so different!

kimmw728 profile image
kimmw728 in reply toMet00

seems that way! We navigate this together, I guess. ☺️

FearFracture profile image
FearFracture

Does this also apply to ppl who reverse their bone loss via natural means?

My thoughts are if you are able to naturally improve you BMD that you are probably aware that you will have to continue with your “new” diet and exercise program to maintain the gains or keep bone loss at bay.

Mark_ABH profile image
Mark_ABH in reply toFearFracture

Yes, most people won't be able to reverse bone loss, and even if they are able to add .1 or .2 to their T-score, that doesn't necessarily mean they will be at lower risk of breaking a bone.

FearFracture profile image
FearFracture in reply toMark_ABH

Most people! Do you say “most people” because most won’t actually take the steps necessary to increase their bone density naturally?

Some ppl on this and other websites have stated that they’ve been able to naturally increase their bone density and their stories along with the LIFTMOR study, Marodyne LiV research, and Osteostrong.me claims have given me hope that if I do the work, which I am doing, I will be able to increase my bone density naturally. Guess I’m hoping I’m not “most people”.

NatureGirl7 profile image
NatureGirl7 in reply toFearFracture

I NEED the hope that you have with "putting in the work" will make the difference. I am researching every single thing that you have mentioned. I hope this fact gives you some hope. Although my Mom doesn't have osteoporosis she started going to the gym at 70 yrs old and continued to go to the gym until she was 90. She is 91 and never had a fall.

Mark_ABH profile image
Mark_ABH in reply toFearFracture

It's great that you are doing all that. My response would be don't get discouraged if your T-score doesn't budge much. What you are doing is surely helping you avoid fractures and maintain an active lifestyle!

HeronNS profile image
HeronNS in reply toFearFracture

There has been some research on improving bone density without OP medications and it does appear to be possible, above and beyond the anecdotal evidence of people like myself. I don't see why it wouldn't be possible. In the course of about ten years every single cell in our body is renewed - ten years because that's how long it takes the skeleton to be completely rebuilt! In that time period of course every cell in our stomach wall will have been replaced many many times. The body really is miraculous.

After a lengthy break, because I injured my knees at the start of the pandemic (no broken bones!) I took up tai chi again and am finding my sense of balance is improving and I feel generally stronger all over after rather a bad couple of years. First were the bad knees and then a major flare of PMR last year, but things are better now. Through it all I exercised as much as I could, although it was severely curtailed for a while, and took my supplements, especially Vitamin K2 and also added magnesium supplement, having relied on diet before. It seems I can't use my Nordic poles at the moment because whenever I do I have a terribly painful shoulder - one or the other, so I suspect the pain originates not in the shoulders as such but in my arthritic neck. So I do neck exercises and try, somewhat unsuccessfully, to maintain good posture.

FearFracture profile image
FearFracture in reply toHeronNS

What brand and how much K2 do you take daily? I’m currently taking Nature Made (has USP seal) K2 100 mcg.

HeronNS profile image
HeronNS in reply toFearFracture

Canadian Brand, Natural Factors. I take 2 x 100 mcg capsules a day. Australia has an RDA of 180 mcg, and I have never heard of another country actually having an RDA, so this is the closest.

lawdog profile image
lawdog in reply toMark_ABH

Well, quite frankly, with all the discussion of what supposedly helps but then doesn’t really, the venue is beginning to read like a spiderweb and why should I even be concerned or try. We’ll all just have a bone issue that is just going to create serious problems for the rest of my life and why even bother try to figure out what measures to take . There is too many hopeful paths to take that are shot down. Think I’m finished reading this venue and just let the doctors throw the dice for me. 💁🏻

lawdog profile image
lawdog in reply toMark_ABH

And…..?????? If I tried to follow everything recommended on this venue and the materials provided I would have no time left to live a life that I am trying to preserve my bones to live my life. 😳. Doesn’t anyone else feel this way? 💁🏻

FearFracture profile image
FearFracture in reply tolawdog

I've read that you basically have a whole new skeleton every 10 years. We all know that it's not quite that simple but our bodies are always creating new bone. The problem for those of us with low bone density is that our bodies are losing more bone than we create, but we are still turning over and replacing bone.

In 2017, I was at the low end of the range for vitamin D. I'm very fair skinned and I never left the house without slathering on the sunscreen. I was trying to do the right thing so I wouldn't get skin cancer, little did I know, all that sunscreen was blocking the production of vitamin D. I have since gotten my vitamin D levels up.

After having read that vitamin K2 is good for bones, during my last endocrinologist office visit (December 2021) I asked my doctor his thoughts on vitamin K2, and he said that there is evidence that vitamin K does help improve bones and he then said that my vitamin K was on the low end in 2019*** so I have since added vitamin K2 supplements. Additionally, I have started eating 6 prunes a day and I now eat 1 serving of almonds at least 5 days a week and I've given up gluten, caffeine, and carbonated beverages. Additionally, I have changed my exercise program and I have joined a gym.

If our skeletons turn over every 11ish years, then all of these changes might in fact have a positive impact. Maybe I am kidding myself but nothing I am doing can hurt and so I am choosing to hold on to the possibility that I will improve my BMD, and another thing to remember is for ppl with bone loss, just maintaining your currently t-scores is a positive.

***Sidenote: Regarding my vitamin K levels in 2019--My vitamin K level was within the normal range so I, not being a doctor, didn't think there was anything to worry about or address. What I can't understand is why my doctor failed to tell me in 2019 you need to try to get your vitamin K up. Why did it take me asking 2 years later about vitamin K for him to say oh yeah that would be a good idea for you to take it.

TWEETYCAT profile image
TWEETYCAT in reply toFearFracture

Unfortunately doctors are overwhelmed. I go in once a year to see my doctor and I make out a list of everything I need to talk with her about and I give her a copy. We go line by line and she types these things in the computer for documentation and we discuss. I think people need to be more proactive and do research regarding their health and prescription side affects, alternative supplements. My doctor is very open to my suggestions regarding my health and have given her information she did not know about. As you get older, have a friend, or one of your children go with you to advocate for you and ask more questions. I'm 67 and I do not remember things like I used to. Just to go give an example: 4 years ago a sonogram was done on my carotid arteries and I was told my left had over 30 percent plaque and my right was 70% blocked. I was perplexed because I eat so healthy and walk and work out and I was in complete denial. In march i had my yearly physical with my doctor and I told her I wanted another sonogram to check how bad my arteries were now. To make a long story short, the specialist doing the sonogram, who was so helpful, told me that this should have been done once a year, given the numbers I gave her from 4 years ago. I got really worried because it was taking her so long, much longer than the first one I had done. In my mind, I thought it probably got much worse because she kept going over the arteries so many time. I asked her what she was seeing and she told me she could not tell me anything. 2 days later, the specialist who read the sonogram results and I Quote: The previous sonogram read by the specialist was interpreted/read incorrectly. The right carotid artery has "0" plaque and the left has <10%. Kind of makes you wander how a mistake can be made like that. I was ecstatic with this news, but I was also angry that for the last 4 years I was put through hell thinking I could have a stroke at any minute. The moral of the story is, advocate for your health, stand up for your health because no one will do it better than you. Research is the key and if you are not satisfied with answers, keep asking.

FearFracture profile image
FearFracture in reply toTWEETYCAT

TWEETYCAT, I too go in with a list of questions. I have done this for decades. Unfortunately, not all doctors are happy about this. During my last visit with my endocrinologist in December 2021, I had my questions with me. Some questions my doctor was unable to answer and he did not volunteer to find out and get back to me. I had a zoledronic acid infusion in November 2021 because he prescribed it, and one of my questions was "what is the MOST anyone's bone density has increased after one dose of zoledronic acid?" The reason I want to know this is that I want the range of what to expect. He had no idea and couldn't even give me an educated guess. Note, I have since called the makers of the drug and they sent me all the info on the drug, which I have not yet read, and they told me that I can ask my doctor my questions and if he can't answer then HE can call them and have a peer to peer conversation with someone at the company and then get back to me with the answers. I intend to tell my doctor this during my next visit this week and MAKE him do his job because I have another question about zoledronic acid related to it's not just inhibiting osteoclasts but also inhibiting osteoblasts and I need to know how much it is interfering with my body's ability to make bone on it's own.

During that same December 2022 office appt, as I was going through my questions, my doctor told me to speed it up. I did not have that many questions, and frankly, I find it obnoxious that he doesn't want to take the time to answer my questions. Makes me think he is very content just prescribing drugs to his patients that really don't want to make any changes to try and improve their health without the meds.

wellness1 profile image
wellness1 in reply toFearFracture

...I have another question about zoledronic acid related to it's not just inhibiting osteoclasts but also inhibiting osteoblasts and I need to know how much it is interfering with my body's ability to make bone on it's own.

If your doctor has anything substantive to say on this, would you mind letting us know?

Pte82 profile image
Pte82 in reply towellness1

wellness1, geranylgeraniol offers benefits to users of zoledronic.

blog.designsforhealth.com/n...

hindawi.com/journals/sci/20...

wellness1 profile image
wellness1 in reply toPte82

Thanks, Pte82. I appreciate your comments and links. I don't have zoledronic acid infusions. I'm interested in the idea that bisphosphonates disrupt the bone remodeling cycle in a way that also inhibits osteoblasts.

Geranylgeraniol sounds very interesting. It doesn't appear to be available in the UK.

FearFracture profile image
FearFracture in reply towellness1

Yes, I have an appointment scheduled for this Thursday and I will let you know what I find out. :-)

wellness1 profile image
wellness1 in reply toFearFracture

Cheers, FF. Good luck with your appointment.

lawdog profile image
lawdog in reply toFearFracture

Yes, please let us know how you appt goes. Best luck

FearFracture profile image
FearFracture in reply towellness1

Just got back from my appt. and not only does my doctor not know the answer, he is unwilling to call the drug company and find out. He flat out told me he didn't have time to do that.

I'm not surprised that he didn't know the answer but it's horrible that a doctor, who is willing to prescribe serious drugs to his patients, refuses to help.

Right after he told me that he wouldn't call the drug company to get the needed info, he told me that he wanted to see me back in 3 months. LOL.

I've known for a while that I need to find a new doctor so that is what I will be working on next.

wellness1 profile image
wellness1 in reply toFearFracture

Well, that's disappointing. I'm sure it's difficult keeping up with all the latest research, but he seems remarkably incurious. Good luck finding a doctor whose approach suits you better.

This whole concept of the anti-resorptives inhibiting osteoblast activity seems terribly important to me.

FearFracture profile image
FearFracture in reply towellness1

Yes, it seems a doctor would want to better understand the drugs he is prescribing especially when they might be interfering with what the patient is trying to achieve.

lawdog profile image
lawdog in reply toFearFracture

A list of questions to give the doctor and keeping a copy for oneself I think is a good thing. Been doing it since my 30s . Handing it to the doctor first thing saves time. The copy makes certain what was covered. There have been times when I stood and told one he hadn’t answered several questions. (I have a southern US accent and he is Asian. Made his staff laugh) Another time, I just didn’t leave the office until he came back. I had been the physician relations manager for Humana so guess that helped. It takes a year to get appts and I agree with you tha health corp. should budget enough time for patients to have questions answered.

Regarding zoledronic acid, my Reclast infusion was primarily prescribed after 2 years on Forteo daily injections to maintain the improvement in my situation , including the 12 per cent increase in my bone density where my body needed it. But had to receive it once a year.

I have read in American Bone Health materials that Reclast may increase bone density by 4 per cent. I will be asking my rheumatologist your question about the Reclast bone density without having the Forteo first at my. appointment with him in the next two weeks.

Interestingly, my nurse advised me that the other women receiving the Reclast in the hospital outpatient infusion center when I was there were receiving Reclast to control high blood calcium levels that can occur during their cancer chemotherapy treatment.

HeronNS profile image
HeronNS in reply toFearFracture

Where I live a doctor is only allowed to bill public health service for one item at a visit. In other words, if you have more than one issue (and if you have a chronic condition there will always be another issue) you have to make another appointment. (Good luck with that.) The exception is if you are there for a covered vaccination, like flu, they can bill for that plus another issue. Very clunky, but back at the beginning of the program in the 60s the docs didn't want to go on salary, they are all independent businesses so the paperwork is ridiculous and patients don't get the time they need because our GPs earn relatively little and have to limit each appointment to 10 minutes (which is really less because that includes their paperwork time). It was not like this in the beginning. Government has created this bureaucracy because they don't trust the docs to be honest with the billing practices I guess. I used to be able to go in with a list. When the kids were little we would all go for one appointment en famille, and the doctor didn't complain. Long time ago now. Because I have PMR I haven't asked my newish doctor anything about bones, although I suppose I should have the DXA scan I didn't have during the pandemic. Over five years since last one.

noRx4me profile image
noRx4me in reply toFearFracture

"I too go in with a list of questions. I have done this for decades. Unfortunately, not all doctors are happy about this"

True, (most) doctors don't like well informed patients. My rheumatologist was quite combative when I asked questions. Needless to say I won't be returning to him.

Kaarina profile image
Kaarina in reply tonoRx4me

Definitely can be very tricky. We are only allowed to chat to a GP in our practice about one health issue at an appointment. One has to be very careful about how one goes about giving GPs attachments to read that one has found on the net. One has to first get to know the doctor and this can also be tricky because I for instance can never see the GP I am registered with and one hardly ever sees the same GP more than once unless they make the next appointment to see you again in a week or so whilst you are actually there. . Sign of the times. :(

lawdog profile image
lawdog in reply tonoRx4me

It is unfortunate your doctor has this approach to you. BUT perhaps informing him , after you have a doctor better suited for you, why you are firing him might make him think and change his way to other women.

noRx4me profile image
noRx4me in reply tolawdog

Its been my experience that saying anything would be like spitting into the wind.

#1 Doctors have a medical degree, they won't listen to others that don't have same

#2 I would be labeled as "difficult" - who knows what that consequence would be in this day and age

I was actually having a nice conversation about my options with said Dr and just asked a simple question when he said "If you are not going to consider any medication I won't argue with you" and dismissed my concerns. So someone like that has no idea how to interact with patients.

Bottom line, I am DONE with mainstream medical doctors. Did wonders for my grandmother, she lived to 104 with no meds and no concerns

FearFracture profile image
FearFracture in reply tonoRx4me

Funny story, years ago I went to the eye doctor. There was a poster in the exam room with pictures of various eye diseases. During the exam, I asked the doctor how he knew I didn’t have any of the eye diseases listed on the poster. He said, “I went to medical school”, and he pointed at his framed diploma, which was also hanging on the wall. LOL. I wasn’t questioning his credentials, I wanted to know what he was or wasn’t seeing.

in reply toFearFracture

Bisphosphonates - oral and IV - greatly decrease resorption & formation, as these processes are coupled. Osteoporosis of course occurs when resorption remains greater than formation over a period of time. Bisphosphonates, from my understanding, increase bone density basically by shutting down the bone turnover process. The only OP med I am aware of that decouples the resorption/formation process somewhat is Evenity (can bump formation while holding down resorption - but only works for up to a year). I used Tymlos 2 years, Evenity 1 year & had my first Reclast infusion this year 2 mos. after completing the 1 yr. course of Evenity. I have regular DEXA/TBS scans, BTM labs (P1NP for formation & CTX for resorption) & 24 hour urine tests for creatinine, calcium & sodium.

FearFracture profile image
FearFracture in reply to

Seems like you might have seen my post asking for help on deciphering my bone turnover marker tests healthunlocked.com/american...

My endocrinologist was of no help. He said that my

Osteocalcin, Serum was low but it was within range for premenopausal women just near the lower end and I am postmenopausal. Additionally, he's the one who prescribed bisphosphonates and from what I have read bisphosphonates lower osteocalcin. Additionally, he treats my hypothyroidism and after I left his office I re-read my bone turnover marker pdf s3.amazonaws.com/Food4Healt... and regarding osteocalcin it says "Osteocalcin is produced by osteoblasts (bone building cells) and is widely accepted as a marker of bone osteoblastic activity. Osteocalcin, incorporated into the bone matrix, is released into the circulation from the matrix during bone resorption and is considered a marker of bone turnover rather than a specific marker of bone formation. Osteocalcin levels are increased in metabolic bone diseases with increased bone including osteoporosis, hyperparathyroidism, , and in individuals with fractures. Osteocalcin measurements help to monitor therapy with bisphosphonates or hormone replacement therapy [HRT]) in patients with osteoporosis or hypercalcemia. Decrease in osteocalcin is also observed in some disorders (eg, hypoparathyroidism, hypothyroidism, and growth hormone deficiency)."

And goes on to say

"What does this mean: Reference range for females and males: > or =18 years: 9-42 ng/mL** Elevated levels of osteocalcin indicate increased bone turnover. In patients taking antiresorptive agents (bisphosphonates or hormone replacement therapy: HRT), a decrease of 20% or less from baseline osteocalcin level (ie, prior to the start of therapy) after 3 to 6 months of therapy suggests effective response to treatment. Patients with diseases such as hyperparathyroidism, should have a return of osteocalcin levels to the reference range within 3 to 6 months after complete cure. Reference: Mayo Clinic Laboratories."

More and more I think my endocrinologist has no idea what he is doing when it comes to treating osteoporosis. In 2020 and in 2021 he was telling me my bones were "horrible" and pushed bisphosphonates. During my appt last week, he said, "just do whatever makes you feel comfortable" which leaves me with a whole host of questions. If my osteocalcin should be higher as he suggested, shouldn't he be saying that I shouldn't take bisphophonates at this point.

HeronNS profile image
HeronNS in reply toFearFracture

Should have finished reading this thread before my reply to you above!

lawdog profile image
lawdog in reply toFearFracture

FearFracture, thank you for your reply and info regarding adequate sunshine as well as enough protection to prevent cancer and other medical issues later. Like your use of sunscreen, living in Florida for over 40 years skin was always the concern not bone condition as I suppose doctors assumed we received enough sun just by living here to not worry about our bones. Was never told anything about K supplements .

I doubt if most residents here put on sunscreen every time they leave the house unless children are involved or there are plans to be in the sun for a length of time live

outside at the beach, yard work, running and golf, etc. I always use moisturizer with sunscreen on my face and particularly my hands if I am only driving to the office or indoor shopping, ducking sun. You are on point as the encouragement to take K supplements should have been encouraged to help maintain good bone health. 💁🏻💕

HeronNS profile image
HeronNS in reply tolawdog

I don't think any of us would do everything recommended. But I have to eat every day, and I pop a couple of pills anyway, and I need to get outdoors for some exercise, and do other exercise in the evening while I watch tv. Doesn't restrict my life much at all - just adjustments to what I would be doing anyway.

lawdog profile image
lawdog in reply toHeronNS

HeronNS 🧡. Was diagnosed with EOE after completing Forteo (nothing related), so still trying to deal with that and finding a nutritionist, and so my frustrated child occasionally breaks out. 😳Some foods recommended for one are absolutely restricted by the other. 🙄 Pardon my momentary tantrum.

HeronNS profile image
HeronNS in reply tolawdog

Oh yes, sorry, I'd forgotten you had that other diagnosis. A bit more serious than my conflicting one - PMR which needs prednisone for treatment, which in turn weakens muscles, additionally osteoarthritis which makes some exercise painful, but - the need to keep moving for both mental and physical (bone and cardio) health. Surviving to old age is not all it's cracked up to be!

lawdog profile image
lawdog in reply toHeronNS

Nothing to be sorry about. You’re dealing with prednisone use which is a very serious situation on top of osteoarthritis and I respect you and your attitude. My chronic pain responds well to epidurals, but rollerblades and running marathons are probably not going to be part of our exercise programs. ❤️

HeronNS profile image
HeronNS in reply tolawdog

So true - and never would have been in all my life! I have recently restarted tai chi and finding it is really helping, and my sense of balance is improving. That's about my speed these days. ;)

lawdog profile image
lawdog in reply toMark_ABH

Mark what do you mean by Most People won’t be able to reverse bone loss…did you mean ‘recover or replace bone loss? Otherwise my Forteo success doesn’t make sense.

Mark_ABH profile image
Mark_ABH in reply tolawdog

I said that in reply to someone asking about using "natural" (nonpharmaceutical) means.

lawdog profile image
lawdog in reply toMark_ABH

Ok thank you.

Met00 profile image
Met00

What about people who develop osteoporosis as a result of hyperparathyroidism? Bone density can be restored after a parathyroidectomy - surely then it can be officially be considered reversed?

Mark_ABH profile image
Mark_ABH in reply toMet00

That is not clear. Here is what I found via a quick search ... "Overall, parathyroidectomy is seen as the curative and definitive treatment of this condition with significant improvements to BMD and reductions in nephrolithiasis, although it is unclear as to whether there are marked improvements in bone strength and fragility fracture risk [7, 14, 28]." ... hindawi.com/journals/ije/20...

I am still making my way through the news guidelines. Not sure if they are more focused on age-related "primary" osteoporosis vs. secondary. But if you have a disease or are taking a medicine that damages the bone, the bone isn't going to go back to how it was when you were 25.

Met00 profile image
Met00 in reply toMark_ABH

At 65 I would be happy with average for my age! From Australian research I do believe it's possible to build back relatively strong, healthy bone with the correct exercise regime.

FearFracture profile image
FearFracture in reply toMet00

So do I and I am definitely going to try! A positive attitude is half the battle.

NatureGirl7 profile image
NatureGirl7

USA doctor that I am aware of anyway focus solely on T-scores to measure positive results from drugs, vitamins and minerals, diet, and lifting weights. So Mark your comment contradicts this. Is there another way that you suggests measures the improvement of bone mass-density? I am confused by your post" Yes, most people won't be able to reverse bone loss, and even if they are able to add .1 or .2 to their T-score, that doesn't necessarily mean they will be at lower risk of breaking a bone." I thought using proactive ways to increase bone density is the actual purpose of this forum? I haven't noticed a posts about using walkers, canes, grab bars and even balance classes to reduce falls. I personally am 60. I don't need those things yet. (I can easily stand of one foot for 30 seconds or more.) I will keep those things in mind for the future, but I don't see fall prevention so far as focus in the month that I have been part of this forum. I honestly have the hope that FEAR FACTOR has. I don't expect to have the same capacity to exercise at 80 yrs, old but I will focus on balance training and have a handicapped accessible house at that point.

in reply toNatureGirl7

Thank you for your post regarding balance training. This is what you will find when researching what this site is about. It’s not only about “using proactive ways to increase bone density “

“We engage, educate, and empower people to build and keep strong bones for a long and independent life. Our information and resources are scientific and practical for people toprevent bone loss, osteoporosis and fractures.”

Once a person is diagnosed with osteoporosis it’s a fact of life that we have to live with this condition. . We are alerted to the fact that we are at risk for fractures and the sites recommended for exercises also have routines for balance . We should be aware of what’s happening to our bodies to know when it’s time for a walker or cane.

lawdog profile image
lawdog in reply to

You make very good suggestions. In addition to balance exercise, diet, maintaining bone density. proactive measures to avoid falls due to lifestyle can be helpful.

In my 30s I had a simple freak fall over an electrical cord at work that didn’t break bones but required a great deal of neurosurgery and change in career. Also started changes in my life to prevent falls as I never wanted to get hurt like that again .

One story house, no stairs, arrangement of furniture to prevent or break a fall, no cords exposed on floors, lever door handles, seat and handles in the shower, no step stools, area rugs that secured to the floor, having the garage rearranged so there are no tools, trash cans or clutter blocking the easy entry into my car or walking through the garage into the yard or house. That was a tough one for my husband. Due to water tables, there are no basements in Florida and garages become crowded work and storage areas.

I’m in my 70s, no falls in 40 years caused by home environment and I am not worried I should move or make major alterations of my home now that I have osteoporosis . Hope these suggestions are of help to people who don’t need them yet.

Mark_ABH profile image
Mark_ABH in reply toNatureGirl7

Hi, the purpose of this forum is really bone health, and not just bone density. We want people to avoid having fractures that will take away their mobility and independence. Bone density as measured by the T-score is just one factor (an important one, to be sure) in your bone health and your overall risk of breaking bones.

NatureGirl7 profile image
NatureGirl7 in reply toMark_ABH

So far I have only focused on the forum. It has only been a month since I joined. My next step is to read your entire website. When I reflect on that. Your forum is driven by member questions and information. Your full website will reflect a wide array of information written by experts in the field. I have been reading other information too from Mayo Clinic and other sources. I truly appreciate your forum and look forward to reading the full website.

lawdog profile image
lawdog in reply toMark_ABH

And…? Mark I read everything you were kind enough to send me and now I am hesitant to go forward with a change to Prolia as the Forteo information doesn’t address if previous users of are able to resume Forteo now that it is approved for more than the two years.

lawdog profile image
lawdog in reply toNatureGirl7

Very well written and thought out question on point.

FearFracture profile image
FearFracture in reply toNatureGirl7

NatureGirl7, I'm 53 and I don't have balance issues either. I add in a few balance exercises here and there just to make sure I don't lose my balancing abilities. In the mornings, while brushing my teeth, I generally practice standing on one leg. Additionally, I have found some more "advanced" balance exercises that I sort of randomly toss in here and there.

I avoid forward flexion and I practice hip hinges and pay attention to how I move when doing normal household chores--my thought is, if I get used to moving 'correctly', hopefully, it will become second nature.

When I first started looking up exercises for osteoporosis/osteopenia, it seemed like everything was geared toward much older ppl who aren't as mobile as I am. I joined a gym and started slow, just to make sure I didn't overdo it. I generally go every other day. I just wanted to sort of get into the routine of going to the gym and to do what I could do. I also take two 20+ minute brisk walks each day.

I had a zoledronic acid infusion in November 2021. My doctor sort of pushed me towards it and I really didn't know what else to do and I didn't find/join this website until after I'd had the infusion. I was really nervous about having the infusion because of both the potential short and long term side effects. I really didn't have a problem with the infusion regardless my current plan is to do what I had originally asked my doctor about when I was first diagnosed, to try natural means of reversing my bone loss, so I am not planning to have a second infusion this November. I will have another DEXA to see if there has been an improvement in my t-scores.

My goal is to potentially following something like Cindi' plan betterbones.com/exercise/bu... I'm not 100% sure but I might hire a trainer to work with me at least that the beginning, but the earliest I will start that is in November.

NatureGirl7 profile image
NatureGirl7 in reply toFearFracture

I don't do special balance exercises, because balance is just part of my life. I kick a soccer ball, shoot baskets, bike ride as part of my job working with an adult with special needs. For fun I when the weather is warmer, I will paddleboard again. It is great for balance especially when it is windy. Getting in and out of my kayak is also good for balance. I can't imagine giving up paddle boarding and kayaking yet! I want to work on my posture and bending correctly to pick things up and even empty the dishwasher.

susie193 profile image
susie193

I've increased my bone density without bone drugs.

2019

hip score -2.6

Neck femur -3.3

Spine -3.9

2022

hip score -2.2

Neck femur -2.1

Spine -3.2

👍

TWEETYCAT profile image
TWEETYCAT in reply tosusie193

Hi Susie, can you tell us how you did that? Any information helps us all. Thanks so much!

susie193 profile image
susie193 in reply toTWEETYCAT

There's honestly no big secret. I don't know if it's been down to going onto a HRT since December? But that could be a big reason. I take high dose D3 at least 3,000 iu a day and I take it with K2 100mg.I don't take calcium. I try to eat prunes 5-10 a day (Californian ones are the best).

Have Kefir. Organic chicken bone broth. My mum makes me this with lentils to make it a soup and I also buy organic bone broth from an organic farm (beef and chicken). I have some almost every day. Avoid sugar, I don't drink soda/fizzy drinks.

Stopped smoking. Cut down a lot on tea and coffee. Celtic sea salt.

Drink a lot of water. I don't do a lot of exercise because I've had several spinal fractures.

I just take the dogs over the park most days but not far.

My spine is the weakest part, I've had several fractures.

They still want me to try Prolia, but I'm going to refuse it.

Don't believe people when they say you can't reverse osteoporosis or osteopenia without bone drugs.

TWEETYCAT profile image
TWEETYCAT in reply tosusie193

Thank you for your response. There has been studies on taking natural calcium from microcrystalline hydroxyapatite (ground up bovine bone) I use ancestral living bone capsules, 3 throughout the day from New Zealand grass fed cows. Take Boron, 200 mg of K2, 3000mg D3 and Nutricost magnesium Glycinate, 2 a day, but never with the calcium. The problem with most calcium supplements are that they include magnesium. You should never take calcium and magnesium together as they fight each other for absorption. Take calcium at least 4 hours apart and magnesium 2 hours before or 2 hours after calcium. Also rebounding is a fantastic way to help your bones along with walking every day. My next bone scan is next March, so hope to see more improvement.

Pte82 profile image
Pte82 in reply toTWEETYCAT

TWEETYCAT, my 85 year old mother with Alzheimer's essentially followed your regimen and put bone on her back and hips when she was tested. Over twenty years ago she took only calcium with D as her Doctor instructed stood up one day and her femur broke because of osteoporosis. At that time I too thought what the Doctor was instructing was what was needed for bone health. I was also told at her age she could not add back bone. I didn't accept that and using Windows 95 set out for answers. I learned about New Zeland bovine bone, boron, silica, magnesium, D3 and vitamin C from a New England company called Pioneer Nutritional. They had a single product I could have the nursing home dispense with the nursing home Doctor's approval. She lived eight more years without broked or fractured bones. So, even at 85 with Alzheimer's she did put bone back at a level that astounded the staff. By next March your bone scan will be a reward for your protocol.

TWEETYCAT profile image
TWEETYCAT in reply tosusie193

I missed that you are now on HRT therapy. You did not state your age. Usually, doctors will not put seniors on HRT, so just curious what form you are on. HRT has been shown to really help with bone density, but worried about doing this at age 67.

susie193 profile image
susie193 in reply toTWEETYCAT

I'm 52. The HRT could be a big part of the bone increase, but I've only been on it since December last year. To be honest I'm only taking the HRT for my bone density, in the UK they won't prescribe HRT for osteoporosis. I don't think it's down to any one thing but probably a combination. And I realise it will be a constant life long fight against osteoporosis.

FearFracture profile image
FearFracture in reply tosusie193

Susie193, If you don't mind the personal question, did you just go through menopause? I've been told that HRT must be started shortly after menopause.

susie193 profile image
susie193 in reply toFearFracture

I was approx. 50, difficult to say exactly.

FearFracture profile image
FearFracture in reply toTWEETYCAT

TweetyCat, I thought that after a certain time doctors wouldn’t put ppl on HRT because they’d gone through menopause too long ago for HRT to work, not because of just being older.

I went through menopause in my early 30s (was perimenopausal in my mid 20s) and I did not do HRT. I’m now 53. Do you think I’m a candidate for HRT?

TWEETYCAT profile image
TWEETYCAT in reply toFearFracture

I just ordered NATURES BALANCE bio-identical estradiol and progesterone cream set from Amazon. It's plant based and you rub in 1/8 tsp to areas on the body once to twice a day. I used progesterone cream from wild yam for years to help with hot flashes. From what I have read, some women using natures balance cream has helped with their bone loss issues with good results. I will try it for a year to see. It's all natural ingredients and this company has been in business for several years, so I'm going to give it a try. I too went through menopause early 40's and was on estrogen patch for 4 years. You should talk with your doctor about using pharma prescribed hormone treatments. Good luck to you!

FearFracture profile image
FearFracture in reply toTWEETYCAT

Did you talk with your doctor about using NATURES BALANCE bio-identical estradiol and progesterone cream or did you make this decision on your own?

TWEETYCAT profile image
TWEETYCAT in reply toFearFracture

On my own.

NatureGirl7 profile image
NatureGirl7 in reply tosusie193

Where did you get the recommendation to cut down on tea? Does that include green tea?

NatureGirl7 profile image
NatureGirl7 in reply toNatureGirl7

Did you mean caffeine tea? I drink decaf green tea.

susie193 profile image
susie193 in reply toNatureGirl7

No, I would drink green tea because I don't take milk or sweetener in it.

susie193 profile image
susie193 in reply toNatureGirl7

It's not so much the tea as what I put in it. I use sweeteners and skimmed milk, can't drink it any other way.

Babsie51 profile image
Babsie51 in reply tosusie193

I would love to know your secret as well!

Met00 profile image
Met00

I've been puzzling over your post since you posted it! I don't understand why someone who hasn't fractured but has been diagnosed with osteoporosis due to poor bone density (as per a DEXA scan), would still be considered to have osteoporosis if they improved their bone density to back into the normal range! The International Osteoporosis Foundation says " Osteoporosis is a condition where the quality, quantity and strength of your bones is reduced, making them more likely to break." (osteoporosis.foundation/pat... Surely if you've improved the quality, quantity and strength of your bones, they'll no longer be "more likely to break" and therefore you would no longer have osteoporosis? The old thinking that you cannot build back bone density has been disproved in some studies, particularly from Australia.

lawdog profile image
lawdog in reply toMet00

Met00, to whose post are you replying? I’m using a phone and sometimes the lines inserted to connect replies to comments becomes indecipherable, Thanks for clarifying. 😳😄

Met00 profile image
Met00 in reply tolawdog

Lawdog, it's supposed to be a reply to MarkABH!

lawdog profile image
lawdog in reply toMet00

Thank you, as on my phone your post has nothing indicating that, nor does my intended reply to Mark and perhaps that is why Mark does not appear to have responded directly to either of our replies to his post.

Met00 profile image
Met00 in reply tolawdog

I'll re-post, with Mark's name mentioned.

lawdog profile image
lawdog

Ok Mark, 👍. I suffered through every page of the Clinician’s Guide to Osteoporosis you posted. At times my eyes and brain fogged over, but thank you very much for providing it.

ONE POINT STOOD OUT. Once osteoporosis is accurately diagnosed it is not going away but measures can be taken that bones are not broken because of it.

The author compared it to hypertension that cannot be cured, but steps can be taken to prevent hypertension from causing a heart attack or stroke.

Is the insight you were trying to get through to all of us? 😳???

Met00 profile image
Met00

Mark, I posted this before, but not sure whether you saw it, as it doesn't appear to have displayed as a direct response to your original post. So this is the original:

I've been puzzling over your post since you posted it! I don't understand why someone who hasn't fractured but has been diagnosed with osteoporosis due to poor bone density (as per a DEXA scan), would still be considered to have osteoporosis if they improved their bone density to back into the normal range! The International Osteoporosis Foundation says " Osteoporosis is a condition where the quality, quantity and strength of your bones is reduced, making them more likely to break." (osteoporosis.foundation/pat... Surely if you've improved the quality, quantity and strength of your bones, they'll no longer be "more likely to break" and therefore you would no longer have osteoporosis? The old thinking that you cannot build back bone density has been disproved in some studies, particularly from Australia.

Mark_ABH profile image
Mark_ABH in reply toMet00

Hi, I posted this to invite people to read the new BHOF guidelines. You are welcome to read them. Thank you!

FearFracture profile image
FearFracture

Mark, If someone goes through early menopause and does not take HRT at that time, can she take HRT later in life (in her 50s) to combat low bone density?

Met00 profile image
Met00 in reply toFearFracture

There's a growing school of thought that considers transdermal HRT to be a safe and suitable osteoporosis treatment for women, starting at any age. I've heard of people recently being put on it in their 70s!

Uncertain2 profile image
Uncertain2

This post is scary. I took sodium risedronate for 4 years and decided not to go on Prolia as my endocrinologist wanted. Are you saying the fact I took the risedronate makes me more susceptible to my bmd getting worse?!

Mark_ABH profile image
Mark_ABH in reply toUncertain2

No, I'm sorry you got that impression. Were you getting monitored to see how the risedronate was working? Bisphosphonates like risedronate tend to stick around in your system longer than Prolia and some of the others. For this reason, your doctor/health care provider might recommend taking some time off a bisphosphonate after a few years (a "drug holiday").

Pretsini profile image
Pretsini

This is good information. Thank you. From the postings on this site it is apparent that there are vendors out there who are making bank over our concerns over our diagnoses and searches for alternatives to the worrisome qualities of prescribed medication.

My gynecologist just wrote me an Ibandronate script and told me to take it for 3 years after seeing a Dexa scan indicating 8% bone density loss in the hip. I would have appreciated the approach described below.

“BHOF recommends a multimodal, comprehensive approach to diagnosis of osteoporosis: detailed assessment of individual fracture risk, personal and family history, physical examination, and in patients with suggestive presentations (such as height loss, back pain, and/or fractures), focused studies to rule out secondary causes of bone fragility and vertebral imaging to detect prevalent fractures.”

Candygirl31 profile image
Candygirl31

Wow! Thank you for sharing that! It is certainly valuable information.

RubymyT profile image
RubymyT

Hello,

I have osteoporosis just like everyone else here. I have pretty severe spinal stenosis ,scoliosis and kyphosis. I have received spinal and vertebral pain blocks , which do help. What I wanted to know , my hips are painful to lay on , I have been told the osteoporosis is bad in my hips , could that be what's causing that pain

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