Injections for osteoporosis: One of my t scores... - Bone Health

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Injections for osteoporosis

SpaghettiIsGood profile image

One of my t scores is -5 something. My rheummy is insisting that I take injections to treat the osteoporosis. I don't want to. I might also add that I fell a few times within a few years before the diagnosis and didn't break any bones

106 Replies

What are your other t-scores? Do you have any other factors that raise your fracture risk? T-scores alone don't tell the whole story as bone strength and bone density aren't necessarily the same. Your t-scores should be similar, but as you only quote one of them, I wonder whether the others are quite different?

Good question. I was just focusing on the worst one. Will look into that. I just read that doctors are being told to aggressively talk patients into these drugs (probably because no one wants them) and my rheumatologist is quite aggressive in this regard. I have to ask myself:. Why would a doctor 'care' this much? She knows I'm doing research and becoming informed. Isn't it my choice? There's probably no commission involved, but the lengths this doctor is going through to convince me makes me wonder. I think my only other fracture risk is the negative five number. Usually severe osteoporosis means you've fractured. I haven't, so I don't know how I got that diagnosis.

What led to them doing a bone density scan? More often than not, this is given following an unexplained fracture (due to no or low impact, when a fracture wouldn't normally be expected).

i might get bashed for this as most people follow the big pharma route but my sister has just found out she has osteoporosis, her doctor suggested biphosphates. a friend took them and she was worse , so my sister told gp she didnt want them, he then said injections, looking up the injections wasn't much better, another friend has injections and it got better but then reverts back to what it was before after 5 years, so i asked my homeopath, he suggested vit d3 magnesium and k2, there is k1 and k2 i think it is k1 that shouldnt be taken if you are on blood thinners. normally it is k2 that stops calcium clogging up arteries taken with vit d 3 and magnesiun, look at up dr mercola and bone health.. but PLEASE do your research.

Hello! Sounds to me you’re on the right track! We have to do our own research. I’ve just been diagnosed with osteoporosis. I was osteopenia I had a trauma and unfortunately fractured my neck of femur from a very simple fall from standing upright then fell straight down onto my bottom(I’d slipped on some greasy food on wooden dance floor! There began my problems! I had to have a total hip replacement as couldn’t pin my femur. Last year in February I tripped down a couple of steps on stairs at home and fractured my femur (on same leg) just above my knee! I’m really in s*** street now! Needing the metal framework that held my femur together to be removed and a knee replacement. 2 operations! I’m in so much pain. Before all this I was fit healthy and could walk more than now. Doctor put me on bisphonates but they don’t agree with me plus I’ve read they make your bones more brittle so prone to break easily

exactly! it beggars belief that gps put people on that crap biphosfonates my poor friend has been bed bound years with lyme as well.

Think it’s money orientated to be honest. Sorry if I sound negative, but can’t see point in taking something that ultimately compromises your bone health!

Nessie87 profile image
Nessie87 in reply to Nessie87

Your homeopath has more idea! Vit k2 is th one found in things like tempeh and magnesium is good too. Vitamin k1 is the blood thinner one. Good job we’re well informed! Read read read, that’s what I say. It’s like covid vaccination, doctors saying must have it and booster after booster now the more you read, it’s not such a good thing and ultimately in some cases causes problems that never previously existed.

nessie, there is much going on behind the scenes, my homeopath is well known and knows more than gp's even hi s patients doctors agree when he gives them supplements, as fo rthe covid vax, everyone i know who has had it has become unwell,

Make sure you have been tested for "secondary causes of osteoporosis" before even considering medication. What drug is being pushed?

I went to an endocrinologist (upon pcp's recommendation), because I asked what else I can do because I don't want to inject myself daily with tymlos. He suggested I visit an endo, who told me she can tell me if I can avoid taking these injections after some tests. I have to check my notes on what happened after that, because I tried to forget this doctor visit. Apparently there was a miscommunication (per the doctor). I went there to find out if there was another way, but she told me something else. Disappointing, because I waited on my decision about taking the drug, only to get some other answer. When I brought this up, I got the miscommunication answer. I have the test results I can use for future follow up, but this slowed me down. Anyway, when I told my rheumatologist that I won't take tymlos, she suggested evenity ( but only after I refused tymlos. Gee thanks, if I refuse evenity, will the rheummy then suggest another drug that's taken every other month?) and I said I'd research it. This was after her five minute stern warning about the necessity of using this drug and risk of death if I don't. Edit: I looked further into secondary causes, but didn't get too far yet. Does this mean there's other treatments? Or does it mean how you develop osteoporosis?

Given that they are pushing newish meds on you, I suspect they are getting some sort of reward, who knows? Maybe they have just been thoroughly brainwashed! Both of these medications come with black box warnings. If further investigation proves you need a bone med, then you probably should ask about one of the older drugs, like one of the bisphosphonates. For all their shortcomings, and there are many, they are basically safer and come with a lot of history so we know what their side effects can be, Prolia (denosumab) for example was on the market for several years before it was widely understood that discontinuing that medication could lead to rather catastrophic rebound osteoporosis.

Here is a link to a site with an overview of the secondary causes:

osteoporosis.ca/medical-con...

If there is a secondary cause for your osteoporosis, osteo-meds won't fix the problem. For instance, have you discussed Celiac Disease with your doctor and have you been tested for parathyroid gland issues?

Go to betterbones.com and print out this list of tests betterbones.com/testing/wha... to at least discuss with your doctor to rule out other causes.

Note, in 2019 I was diagnosed with osteoporosis. Note, I was 50. My lumbar t-score was -3.9. It is common/usual for your spine to show a slightly lower bone density than other areas, after menopause.

My endo did NOT look for secondary causes. I didn't find the list of tests on Dr. Brown's BetterBones website until after I had started treatment. I know that my endo did NOT rule out many/most of the things on the list and that bothers me. Additionally, I have since learned that my petite size, 4'11", weight at time of 1st DEXA approximately 100 lbs, could potentially cause my t-scores to be skewed, meaning to show more bone loss than there actually is. Note, I too have not fractured.

Another thing that Dr. Brown recommends is making sure you have your complete DEXA report, not just the summary pages. I did not know that the summary was not the entire report and recently learned that my endo prescribed osteo-meds without ever having looked at my full DEXA report. Again, I am not happy with my endocrinologist.

Ok, your endo is acting unconscionably or is dummy, like my rheumatologist. Will you change your endo?

Now I get why secondary causes are important. I think that's what the endocrinologist did, but I didn't understand it at the time.

Maybe the endo also tested me for parathyroid gland issues. I have to check.

How dare my rheumatologist not test me for secondary causes before prescribing these dangerous meds. I need a second opinion then. Thank you for that.

Yes, I intend to find a new endocrinologist. I haven’t done it yet but I can’t do anything until November 2022 anyway—had my 1st infusion in November 2021 and i until I have my next DEXA scan I’m not taking anything else and at the moment I’m leaning towards not taking anything at all until I can figure out if I can improve my bones on my own.

Latest jerk move from my endocrinologist (his office), I called in mid June to get the ball rolling on my next DEXA and it’s been over a month and as usual no one from his office has called me back about the referral.

Yes, I think you need to do what MeT00 and Heron have said. If you don’t know what they all are, you need to find out what all of your T scores are and you should be tested for all possible secondary causes - I’d definitely want to know that before I took any medication.I agree, I felt I came face to face with a real very aggressive and to me scary ‘hard sell’ when it came to osteoporosis meds I found the co-morbidity and mortality chat I had with the fracture liaison nurse really horrible.

I took bisphosphonates faithfully for a few months and gradually felt more and more poorly both physically - not gut problems, the rest of my body and (as mental health appears to be the buzzword these days) I’d say mentally too - before I stopped them.

Even my husband agrees that I became a different person while I was taking the meds - I’m back to my old self now..

A year after I gave up on the meds I was offered an infusion which I declined and a week or so later had a senior consultant called me at home at 8.00 at night, totally out of the blue to tell me ‘no one was trying to bully me’ but he repeated the offer of the infusion.

I know the guy is probably (definitely?) right, my T scores aren’t great and I had a DEXA after I had fallen from a height onto a wooden floor and broken my wrist,

I’ve had a couple of REMS scans that show my bone quality is not fantastic but still fairly ok so I’m taking bone friendly vitamins and minerals along with a bone friendly diet and weight bearing exercise and although that’s not a recognised treatment for osteoporosis. 🤞for the time being.

Could you please tell me what the bone friendly vitamins and minerals are that you are taking?

My T scores are left hip -4.6 and lumbar -4.2.

Jenny

Piglet44 profile image
Piglet44 in reply to Jennyjenny2

Jumping in here as I also want to know this information. It seems like these endos and so on are really not keen to spend time telling us anything just prescribe the drugs and that's all

Well, my T scores are nothing like as high as yours and I know from my REMS scans that the bone quality isn’t too bad, it’s not good but it’s still ok.So if my scores were like yours I’m not sure I’d rely on diet and exercise alone.

I take an algae based calcium capsule every day to top up my diet - I eat foods based on the ROS calcium containing foods diet sheet, when I looked at that list I realised I was taking more calcium than I though - and working with my doctor it was decided that as the calcium was upsetting my gut I could stick with diet however as I don’t drink milk and I don’t like yoghurt I decided I would try and find something that didn’t upset my gut - the algae based calcium - and top up every day. I do eat cheese and for years I’ve eaten a gluten free diet which massively helps my IBS.

I take vitamin D in capsule form every day,

An omega 3 algae oil capsule

Vitamin K2-Mk7 to direct the calcium to my bones

I take a magnesium capsule every day as well

I take some boron too

I eat pumpkin and sunflower seeds as well as a handful of nuts every day and I avoid everything that weakens ones like fizzy drinks, smoking etc.

That’s about it, I have to say a lot of people seem to get on fine with bisphosphonates- I just didn’t and after feeling so awful the first time I was really been out off trying again.

Can't wait to hear if your dexa improves with your natural approach. Edit:. I think the weight bearing exercise you're doing is, in fact, a recognized treatment for osteoporosis and is recommended everywhere.

I’m not sure it will, think the best I can hope for is to slow things down. That and my head feels clear and my body feels better with not taking the bisphosphonates. I really didn’t like how I felt back then. Now my body just feels ‘normal’.

So you had a bone quality test, which is different than a bone density test?

osteoscanuk.com - you can have the more frequently than DEXA scans, you don’t need to use the same machine and it isn’t reliant on how the operator places you.To be honest now that I’ve decided not to take bisphosphonates I can’t really see me being offered another DEXA. ☹️

Is it possible to ask the GP for one?

Unfortunately OsteoScans are only done privately. ☹️ Such a shame when they are so quick and easy. Or did you mean ask my GP for a DEXA? I’d think there is absolutely no chance of that.

I did ask the rheumatologist when I saw her in September and she asked if there was anything more I wanted to know if I could have another DEXA and she said a year was too soon to see any difference.

Yes, I did mean ask the GP. When you say the dexa is done privately, do you mean in office? That's a big machine to have in a private practice.

Maybe other types of doctors can do these dexa's, not just gp's and rheumatologists. One could visit a new office, that would be happy to have a new patient. Better yet, call different offices and ask the office person how that doctor feels about it. Office people like a good story to make their day more interesting.

No, I can’t see that happening with my GP - especially at the moment when waiting lists are huge and there are the most enormous backlogs.

DEXAs are big machines - but you can have them done in private clinics - again you have to pay and even if you did that I don’t know how you would get the same machine and operator every time besides even though there are places you can have them done privately I don’t think it is something you would have done regularly.

The OsteoScan is not at all like a DEXA scan, for a start it is portable, it isn’t big, basically it is done in an office/ surgery room - it is more like the regular scan you get when you are pregnant - gel put on the body part to be scanned, a hand held sensor is run across your lower abdomen and your hip and the readings show up on a computer and are printed off. The equipment used is laptop sized.

The two types of scans are totally different things. If you read the link above you will be able to read all about it.

I take vitamin K2 - MK4 and MK7

vitamin D3

Fish Oil - for omega 3s

Calcium (several small doses throughout the day)

and I am considering adding Magnesium but haven't done so yet.

I'm gluten free because I have NCGS (Non-celiac gluten sensitivity) and if you remotely think you may have a gluten sensitivity you should talk to your doctor about a WHEAT ZOOMER test. Any type of inflammation in your body is not good for your bone health.

Additionally, I eat

2 tablespoons of a fermented food daily - either Kimchi or sauerkraut and full fat Greek Yogurt (not a full serving because 3/4 of a cup is just too much for me but at least some, even if I just dip a few carrot sticks in it). And after reading about the prune study and almond study, I have added 5+ prunes to my daily diet and I eat 1 serving of almonds 5 days a week.

I’ve read that prunes and their juice too are excellent for bone health amongst other things and Almonds too. Walnuts too.

My big question at this pt, which I haven’t been able to get an answer to, is, since bisphosphonates work by inhibiting osteoclasts, the breakdown of bone, and don’t actually stimulate new bone growth (osteoblasts), if my bone density improves after having had a zoledronic acid infusion does that mean that all the other measures I’m taking (improving diet, adding supplements, exercising, weight lifting) are working or causing the improvement in bones.

If anyone knows the answer to this or even has an opinion, I would love to hear it. Also if anyone has seen BMD increase after having reclast/zoledronic acid infusion please share your story.

Your other score is important because if it is okay then you go by that score not the -5 one. I only found this out lately. I have stopped having the checks to tell me a score as well as what is the point if I won’t take the meds. Do take vitamin K2, have yoghurt if able, lots of veggies and fruit, avocados, prunes, as good a diet as you can manage. The K2 puts the calcium into the bones and not the arteries. Check your D3 in your blood tests and also magnesium may be required. I am having collagen powder on my porridge as my daughter bought it for me. All the best to you!

Calvinboy profile image
Calvinboy in reply to MWZ3

How much K2 should we safely be taking every day?

HeronNS profile image
HeronNS in reply to Calvinboy

The only official recommendation I have ever heard of is Australia suggests 180 mcg Vitamin K2 (mk7). I take two 100 mcg capsules a day, so close to that. I believe it is a very safe vitamin in terms of dosage.

SpaghettiIsGood profile image
SpaghettiIsGood in reply to MWZ3

First mention of collagen I've seen on this forum. I took some, but stopped, because it didn't agree with me. I'll try it again soon just to make sure.

SpaghettiIsGoodWhat kind of collagen did you take? I first took bovine collagen peptides and it upset my stomach. I switched to wild caught marine collagen, specifically the one sold on Susan Brown’s website BetterBones.com. It has no taste whatsoever and mixes well with most everything. I add to my protein drinks and coffee. Best of all, my tummy is happy.

FearFracture profile image
FearFracture in reply to noRx4me

I added protein powder to my daily routine. I use Isopure protein powder and Vital Proteins Collagen Peptides and I alternate between the two. I take a 1/2 serving daily and mix with milk rather than water.

SpaghettiIsGood profile image
SpaghettiIsGood in reply to MWZ3

My other score is the one I go by? Not that the higher score? I should fire my rheumatologist right now. Do I use the lowest score? That would be great news.

You could test your scores even if not taking meds to see if what you are doing is having any sort of impact.

MWZ3 profile image
MWZ3 in reply to SpaghettiIsGood

Yes so I have discovered. You take the lower reading which takes a lot of people out of the osteoporosis category. Recent discovery so many may not know it yet. If the lowest is 2 for example your reading is 2 overall.

wellness1 profile image
wellness1 in reply to MWZ3

Hi, do you have a link that would explain what you mean about taking the lower reading? Do you mean the overall hip score vs. the overall lumbar spine score?

I think there's potential for confusion using the terms 'lower' and 'higher'.

If we're talking about DEXA T-scores, these are measurements showing, in standard deviations, someone's bone density relative to a healthy 30-year old adult. People with osteopoenia and osteoporosis have lower bone density represented by negative T score numbers. Say, for example, someone has a hip T-score of -2 and a lumbar spine score of -3. We think of 3 as a bigger number than 2, but -3 is a lower number than -2. If you take someone's lower number, you are going by their lowest bone density reading.

bonehealthandosteoporosis.o...

As others have said find out if your osteoporosis is secondary. Get your GP to test your calcium parathyroid hormone and vit d. Elevated calcium and parathyroid hormone and low vit d could mean your have primary hyperparathyroidism which if left is known to cause osteoporosis. The levels of calcium and parathyroid hormone don't need to be out of range if one is high end the other should be low, I know cos I have both. Get the test done them reply here and I may be able to advise further or refer you to a group than can. Surgery to remove a faulty parathyroid gland should improve my bone density. You don't have to take any medication its your choice. I take magnesium, vit d3, vit k and boron. Be careful taking vit k if you take blood thinners. Also don't take calcium supplements until you gave hyperparathyroidism ruled out.

Blood thinners like fish oil, too?

More pharmaceutical medicines like Warfarin

I was bullied into trying Prolia but I refused,glad I did,dreadful stuff.Sounds like you need another unbiased opinion?It’s up to you whether you take advice or not,it’s your body.Good luck.x

nottowell profile image
nottowell in reply to fraid

I have been on prolia for while with no side effects but before that i was on Aldronic Acid which was dreadful, i was so ill

fraid profile image
fraid in reply to nottowell

Glad it’s working for you.One of the main reasons I declined Prolia was from horror stories of femoral & other unexpected #s ,cited in drug co lit, plus USA sufferers from same are trying to ban it.Even if those are rare,that’s still too much. Hope you get benefits & no side effects.X

Severe osteop does not require a fracture for a diagnosis. If you fracture you may regret not taking some drug, as I did. My scores were all around -3.4, and I had a very debilitating foot fracture that still hinders my mobility 6 years later . I resisted all drug suggestions for a long time; I now am willing to take to try to save my mobility into older age. (I'm 68). I tried Forteo, didnt help. After much research, i did Reclast last June. That has helped me esp my foot issues. This June i will probably go on Evenity (the newest drug, injections once a mo). My new Dr. is a national osteop expert. I will NOT do Prolia, which from my research I think is a dangerous drug with many women reporting horrible debilitating effects. So I have gone from a mindset of NO osteop drugs, to, I now HAVE to do something to save my bones and mobility. Its not a fun choice but............ don't judge your situation from one T score or the fact you havent had a frac. Many people who fracture just have osteopenia. Many Drs. who treat osteop take the "one size fits all" approach, prescribing the standard drugs used for years. Find one who is an expert in osteop.

I had my 1st zoledronic acid infusion in November 2021. You stated that Reclast helped. Did you see improvements in your t-scores after taking it, and if so will you share the improvement numbers? Also, why if Reclast helped are you changing to Evenity? Thanks.

Hi! I'm not due for a dexa till June. My new Dr. said my numbers will probly not improve a lot but won't get worse. I did the Reclast before i saw the new Dr. He said Reclast is a very good drug. I chose it because i did a lot of research on bone edema which i have in my foot from constant bone bruises just from weight bearing on a daily basis. My foot bones are so weak they cannot take everyday activities (and i just weigh 110 lbs). After spontaneous foot frac 6 yrs ago, nothing but constant foot issues causing a LOT of pain and mobility issues. I was desperate! I did much reading of technical medical studies, some studies said Reclast could help resolve bone edema, and i really am doing much better - from scooting around in a wheelchair to being on my feet, running errands, even some easy nature walks. Evenity is supposed to actually grow new bone, so my new Dr. said once Reclast is out of my system (its a once a year IV), he is thinking Evenity to hopefully grow some new bone, then in another year, back on Reclast and will probly do Reclast every year thereafter. The two years of daily Forteo injections with no improvement was a real disappointment. Then I did nothing for 3 years, and got worse. So i knew it was time to say yes to another osteop drug. Being an invalid, when i used to be super active was sooooo depressing. My old Dr (endocrinologist) was just going to prescribe Fosamax............ then i decided i need to find an osteop expert who didnt do "one size fits all" and luckily there was one in my town. I was very fearful of doing the Reclast, but i drank a lot of water before the infusion and really had almost no side effects; just a few seconds of feeling dizzy the first day or so. I saw improvement after about 2 mos. When i see Dr in June, i am going to ask about Evenity success with other patients. I've not had any fracs in spine or anywhere else, just these fricking feet! (knock on wood, as my hip scores and spine are not good.........)

Thanks for sharing. Zoledronic acid is the generic of Reclast. I too had no major side effects after having my infusion in November 2021. I drank plenty of water and took 2 Tylenol prior to receiving it and continued drinking water afterwards and took 2 Tylenol before going to bed.

The only things I noticed were that shortly after getting the infusion I experienced some sharp sensations in my neck but they only lasted for say 10 - 15 minutes and they weren't painful just odd and noticeable. Additionally, I did get a little bit of a sore throat and dry mouth but that cleared up.

I originally started with Alendronate but that caused digestive tract issues so after taking it for 1.5 years, I took my last dose the week of my 2nd DEXA scan. My 2nd DEXA showed that one of my hips had improved by 9% but the other improvements were not big enough to be statistically significant.

I was really hoping for more of an improvement from the alendronate so I know how disappointing it was that the Forteo didn't work for you. I hope the Evenity does. That would be awesome.

You mentioned after the Evenity you plan to go back on Reclast "every year thereafter". I was under the impression that Reclast/Zoledronic acid infusions could only been given for a few years, meaning 2-3.

I think that some Drs. want you to have a drug break after a few years, and i've talked with some women who have been on it for over 5-10 years straight. I do recall the nurse prac. saying to me, that with the state of my bones i might not be able to have a drug holiday. It does concern me for the possible jawbone issues. I guess right now my thinking is "one year at a time"............ and i keep hoping some new great drug that doesnt cause all sorts of possible issues might be developed. So far it doesnt look too promising for that. Have you considered Prolia? Just too many horror stories for me, esp the possible spinal fracs if you get off of it. I've even read of fractures from being a little late for a dose. Geez! My mom had a femur fracture in her 80s from years on Fosamax, it just snapped for no reason (other than hard brittle bones from the drug). Not good at that age. I wish i could walk more but I have to really limit it or I'm in trouble. I am super careful about balance and falling and watch every step I take. Another downside is I can't wear any cute shoes/sandals............ I live in the same pair of athletic shoes. If we're just going out to eat or something like that I can tolerate some Sketchers flats for very short time. Difficult to try to be fashionable but have to have on dorky shoes! At least i live in a warm climate and don't have to worry about snow, ice etc. anymore.

The Prolia stories are a bit frightening. I haven't had a BMD scan since getting the zoledronic acid infusion. I had my last DEXA scan in July 2021. Because I am being treated for osteoporosis, I'm pretty sure my insurance will cover annual DEXA scans. I'm currently trying to decide if I want to get my next DEXA scan in July of 2022 or if I want to wait until November 2022 so it will be 1 full year after the infusion. I'm even considering getting both and just paying out of pocket for one, but I'm not sure if it would make much of difference.

I'm small 4'11" and weighed 100 lbs at the time of my first scan in July 2019. I've recently learned that there is evidence that DEXA scans are inaccurate for smaller people. Just the other day I read a post from someone who said that she is small and after entering her info in Dr. Ott's BMAD calculator her t-scores improved by 1 standard deviation, which is HUGE.

I did a little searching and found the BMAD calculator courses.washington.edu/bone... Unfortunately the clown outfit that did both of my DEXA scans refuses to give me a printed copy of my entire DEXA report so I don't have the correct info to enter into the BMAD calculator.

Note, Dr. Brown (BetterBones.com) and Dr. Lani Simpson lanisimpson.com/ also seem to agree with this idea that DEXA scans can be inaccurate for smaller people.

So, before I take anything else, I would like to get this sorted out. My current goal is to skip the infusion this coming November and work on improving my numbers on my own and re-evaluate in 2023.

I gave up heals for flats decades ago and I pretty much live in my sneakers but I get what you are saying. Maybe you could get a few different cute pairs of sneakers and alternate.

One thing that I have been considering is the Marodyne LiV (low intensity vibration therapy) platform. Have you ever considered using it?

Crazy u couldn't get copies of dexa! I'd wait a full year for dexa. I tend to think with very bad scores there's not much one can do on their own to improve based on my own experience and what several drs said. Maybe with osteopenia it might be possible. Never read about dexa in small people not being accurate. If I change sneakers my feet get messed up! I can't tell u how many prs I've bought and retd to DSW. Good thing they r great about returns. I picture me in same pair for decades LOL. Also hv had several prs custom orthotics. My Ortho Dr who I think is excellent says he's really surprised at my situation based on multiple MRIs all showing same thing, bone stress/bone edema. I have a vibration platform! It was a cheap 100.00 model. The vibration was so strong it hurt my knees after a few minutes of use. My knees are very touchy and easily stressed. I wasn't able to adjust vibration intensity which doesn't seem right. So it lives under the bed now. It's so heavy sending it back w cost a fortune. I used to take strontium yrs ago. It gives a false appearance of denser bones on dexa. Then I took a Rx calcium formula called FosteumPlus which cost about 40.00/mo. New Dr. said don't bother, OTC is fine. I quit eating a lot of dairy due to high cholesterol.

Yes, it is insane that the facility that did my DEXA scans won't print out a copy for me.

July 2022 will be 1 year since my last DEXA so I might have it then or I might wait until November 2022 which would be 1.5 yrs between DEXA scans or do both. Don't know yet.

I'm a little more optimistic about my ability to improve my bone density naturally. I've read a good number of accounts of people actively improving their bone density without meds, even ppl with osteoporosis. Have you heard about the LIFTMOR study done in Australia?

I think the main issue is how much time you want to put into it. I currently exercise for at least 40 minutes a day. Every day, I take two brisk 20+ minute walks. Additionally, I joined a gym and I am taking it slow to avoid injury but I plan to increase the weights I lift.

My concern right now is that I can't get really good solid answers on the bisphosphonates. They are in my system now and will be for a while. I've read that they continue to "work" for 2ish years. I'm hoping they don't impair my efforts to build bone naturally.

Even if my exercising does nothing but stop future bone loss, technically that is a win.

The Marodyne LiV is a low intensity vibration platform and it has been calibrated to vibrate at the exact frequency needed to stimulate bone growth. Whole body vibration platforms are not good for anyone--they can even cause detached retinas. On Inspire.com a few years ago USERID Londoner posted that her 80 y.o. mother decided to forgo osteo-meds and used the Marodyne LiV platform instead. In 2 years, Londoner's mother's t-score had increased by 8 and 7 percent in her spine and hips. I'd happily take 7 or 8 percent increases in bone density. 10 years of those improvements and I'm back to the mean :-) LOL

There are dairy products that have no saturated fat, maybe that means no cholesterol

Bisphosphonates stay in your bones indefinitely so it should be possible, even advisable, to have a "holiday". This is not true of the non-bisphosphonate drugs which have to be followed up with a different med if discontinued for even a short time.

Hi Heron, Hope you are keeping well.

The Bisphosponates do NOT stay in the bones indefinitely.

If they did then we would have continued protection, they work their way slowly out of the bones.

Some individuals are kept on them indefinitely.

My very first fracture occurred shortly into my drug Holiday from 3 years on Bisphosponates.

Studies showed first that bisphosphonate was still present after five years. As the years went by they were found after ten years - at that time about how long they'd been iin wide use, I guess. What I meant to say, perhaps I said it clumsily, is that they don't vanish in a month or two like denosumab does, and cause rebound osteoporosis as they do so. They are more likely to cause problems if they are taken indefinitely, for reasons I've repeatedly stated and which are well known, and should be known by a doctor who does any reading on the subject. Really there is no perfect osteoporosis drug and I am so very very happy that I never was in a position where I was left with no choice but to take one. Everyone has to evaluate their own risk, including their own risk tolerance, and also do enough research that they can take the medication which is going to work best for them.

I have never been able to wear fashionable shoes. I did for a while as a young woman, but eventually, if I was going to a dance or something, I wore stretchy gold slippers! My doctor once said if I had not had to wear shoes when I was growing I likely would not have the problems I have. Not being properly looked after, wearing shoes that were too small or the wrong shape for my feet, have given me a lifetime of painful feet.

About the cute shoes - Haven't broke the news yet about that one, if you know what I mean.

From everything I have read Evenity is taken for 12 months, after that you will need to go onto another medication.

HeronNS profile image
HeronNS in reply to AnnieW55

And purpleraindlk Prolia and Evenity are both made by Amgen. They work in different ways, but I would not touch either of them. We already know the problems with Prolia, and Evenity is too new. There may well be a place for these drugs, but only in exceptional cases for people with major health problems. They should never be used in cases where drugs can either be avoided altogether (possible far more than doctors believe) or a tried and true older drug, with well-known side effects which can be accounted for and managed, can be tried.

Yes I'm not too sure on the evenity and will hv a lot of questions for Dr. I know one trial showed some possible heart issues and another trial did not. Scary and makes decision making really hard. Plus since I've done much better with mobility after the reclast I tend to think maybe stay with that. ???????? I've talked at length w Amgen and nothing learned to help with decisions.

I think unless you really need it (I do know of one person with an end of life condition who took Prolia to save his bones and help with that last year or two, but these are exceptional cases) it is best avoided. I really think giving drugs with black box warnings and potential side effects worse than the condition they are designed to treat is unethical.

FearFracture profile image
FearFracture in reply to HeronNS

My endo said the same that Evenity is too new, best to wait to see what happens with it. Note, I was not asking to take it, he was just talking about what is currently available.

Infusion nurse when i did Reclast said the same thing, too new. I will be curious to see what my osteo Dr. says in june. He has been on various national osteop boards, writes for natl bone and mineral publications etc. He did say last June that they carefully consider which patients they might put on Evenity. My cardiologist was of NO help (cardio warnings on Evenity), just said "never heard of it" and looked on some list of drugs that can cause cardio issues and said it wasnt on it. Not willing to look into it further.............

When you 1st posted you were switching to Evenity, I thought you had already discussed this with whatever doctor is treating you for osteoporosis. That's why I asked why you would switch from Reclast to Evenity.

Another thing to consider is, if you are in the US and Reclast is working for you, your insurance might not cover Evenity just because you want to switch.

Yep, that's what my rheumatologist told me ( it's taken for a year, once a month). I think you can't have dental issues or have to get them taken care of to avoid the side effect having to do with healing of dental work - not fillings, but tooth removal, etc)

How do I know who's an expert?

Hi purpleraindlk

I have lived with osteoporosis for the past 17 years and was first diagnosed 18 years ago.

In that time I have been given all the different bone treatments ( all of which for me have given adverse reactions)including Bisphosponates.

Even with suffering terrible reactions with Bisphosponates in the past I continued to keep going back on them in hope that I just may be able to tolerate them.

WHY would I put myself through that, people may ask.

The answer is quite simple the Pain from spinal fractures for me has been horrendous I have a total of 8 now and my most recent 5 weeks ago.

The message I try to give newcomers to the bone treatments is ,Please don’t go on our negative experiences with these treatments.

Everyone needs to do their upmost to prevent fractures these treatments work really well for many people and can not be judged by others bad experiences whilst taking them.

You yourself will I hope be aware that Evenity like prolia MUST be followed on with another treatment, usually Bisphosponates.

Years of living with osteoporosis has brought the realisation that for any of these treatments to work they have to be used consistently otherwise bone loss will be more rapid and the patient will not only lose what they have gained but more and end up worse than when they started.

Wishing you the very best with your forth coming treatments.

I have had 6 fractures so need some protection so have decided on Prolia but hard to get as i am the one chasing the surgery

I would say you were just lucky when you fell and didn’t break anything. I’ve had seven spontaneous fracture in my back and my dexa scan was - 5. 5 to start with. I consider that as no alternative other than to go on osteo medication. I certainly didn’t expect mine to go and am very limited in what I can do. I wish you well in what you are doing but I think you are playing a game of roulette. It’s too late when they go as I’ve found out.

Mavary profile image
Mavary in reply to Mavary

I will add. I was prescribed osteo drugs when I was flat on my back and couldn’t even walk. The pain I had when moving was horrendous. I have got back on my feet but I can’t do much for very long.

Mavary profile image
Mavary in reply to Mavary

If it helped I would have taken anything. My Cousin has osteoporosis and has been on Denosumab the same medication that I’m on. She has been taking it for years with no problems. I’m now in my third year and am now fine on it. I would love to be able to do everything obi want but my back stops me. I don’t give in though. I sit down take a rest and start again. I feel I’m a warning to everyone else so please take care.

HeronNS profile image
HeronNS in reply to Mavary

And this is what so many of us keep saying. Use these medications when they are necessary. But they are not appropriate for people who are not in such dire straits for whom other treatment, even non-pharmaceutical, is helpful. I am so sorry you have had such a difficult time. I hope things continue to improve for you. Take care.

Mavary profile image
Mavary in reply to HeronNS

Thank you. It has and still can be difficult. I know I’ve done the right thing for me.

HeronNS profile image
HeronNS in reply to Mavary

Exactly. Thank you for sharing. I do wish all young adults could be at least as well-informed about keeping bones strong as they are about the dangers of smoking, signs of stroke, symptoms of diabetes. I was lucky, and I did in fact have an inkling at the time that I was lucky, that when I hit middle age I was working in a job which required a lot of lifting, bending, reaching, pushing and pulling (shelving books in a library!) and also I walked a lot. It was perfect timing for me, quite unintentially of course.

Mavary profile image
Mavary in reply to HeronNS

I had a sit down job but I still had to keep the home going. Cleaning. Cooking etc:

Did your rheumatologist or endocrinologist clearly explain how to read your DEXA or what a t-score means. Every whole number below the mean, the mean being zero, means 10% less bone mineral density than the peak bone mass of an average 30-year-old female. americanbonehealth.org/bone...

Mavary profile image
Mavary in reply to FearFracture

I don’t understand any numbers. I didn’t know I even had Osteoporosis until my T12 went and I was in hospital for 12 days unable to walk and flat on my back. All I could see at the time was that I was going into a special home and was not going back to my home. I did have two back fractures before that. One was 3 years before and was undiagnosed. The last one was just before the T12 went that I was told I had severe Osteoporosis. I don’t think at that stage I had much of a choice. I had four more spinal fractures after the first three.

Ha, my rheumatologist explains nothing except when I ask a question. The endocrinologist may have, but it may have went over my head. I wasn't as versed in clinical language as I am now (and I'm not there yet)

I hope you are doing well.

My 1st DEXA showed that my lumbar t-score was -3.9. My endo did a terrible job of explaining anything to me. I'd had no fractures and I am very active and -3.9 with no explanation doesn't sound too bad. Last fall, I used my insurance's Teladoc service, and some random doctor explained to me, over the phone, that each standard deviation is + or - 10 percent. If your lumbar t-score is +1 then your lumbar spine has 10% more bone mineral density than the average 30 y. o. female's bones. On the other hand, if your lumbar t-score is -1 then your lumbar spine has 10% less bone mineral density than the average 30 y. o. female's bones.

I get not wanting to take meds. I wasn't too keen on the idea of having the zoledronic acid infusion, but I did it because, at the time, I didn't think I had any other real options. However, if my lumbar t-score were -5 and all other causes for bone loss were ruled out or if I had already fractured, I personally wouldn't hesitate to try osteo-meds. A t-score of -5 is 50% less bone mineral density than the average 30 y.o. female. If the cause of the bone loss is something like undiagnosed Celiac Disease, then once that condition is treated, there is a chance that one's BMD will increase with proper diet and exercise, but if there is no secondary cause for the bone loss and the t-score are low, then osteo-meds are probably the best option.

Additionally, another thing to consider is age. If someone is 30 and is diagnosed with osteoporosis with a lumbar t-score of -3.0 then it makes since for them to possibly try natural solutions. But if someone is 80 and is diagnosed with osteoporosis with a lumbar t-score of -3.0, maybe the osteo-meds are the best course of action. The older we get the more likely we are to have balance issues, vision loss, hearing loss, etc. all of which can lead to falls. Falls are the number 1 reason people experience fractures.

Mavary profile image
Mavary in reply to FearFracture

Mine were all spontaneous. The only one I had that wasn’t spontaneous was my hand which I fell on. I wasn’t checked for bone loss then and it was four or five years before I had the back fractures.it's actually eight fractures if you count my foot one. It just started hurting for no reason. I think I could have been saved all the pain If I got if they had sent me for a dexa scan after I broke my hand and if they had recognised my first back fracture. Looking at it now the signs were there. That was very informative. No wonder they said my osteoporosis was severe. My goodness 50 per cent loss is a lot. It was 4.3 last time so that’s forty per cent which is still bad. I’m glad I am on medication as I couldn’t put up with any more fractures. I already think some of them have got worse.

You are lucky you haven’t got any fractures and you’ve probably caught it in time.

What made them do a dexa scan in the first place because they don’t usually do one unless you have a broken bone?

FearFracture profile image
FearFracture in reply to Mavary

I'm in the US and very recently, the US started recommending DEXAs starting at age 50 and making insurance companies cover the cost.

Like you, I should have been sent for a DEXA much sooner. I went through an extremely early menopause for unknown reasons. Additionally, I'm small and fair skinned. What gets me is, had any one of my doctors ever told me to get a DEXA scan, I would have gladly paid out of pocket for it. Then maybe I could have caught it when it was more manageable.

I have always had a relatively healthy life-style. I rarely drink alcohol. I have never smoked or done drugs. I eat a balanced diet and I exercise. I was essentially doing everything doctors tell you to do to avoid osteoporosis and obviously, it wasn't enough. LOL.

Mavary profile image
Mavary in reply to FearFracture

Actually. -3.9 is quite bad I couldn’t have Zolendronic acid because I couldn’t take Alendronic acid. I was tol that anything under -2 was Osteoporosis.

FearFracture profile image
FearFracture in reply to Mavary

Yes, I agree, -3.9 is not a good lumbar t-score :-)

-2.5 and lower is osteoporosis.

I recently learned a few things that I did know when I was 1st diagnosed. I never received my full DEXA report. The facility that did the scan only sent me the summary pages. The endocrinologist who is treating me NEVER received, nor did he try to get, the full DEXA report, and he didn't inform me that he didn't have the full report.

I have an excuse. I'm not a doctor. There was no way for me to know that what I was sent was just a summary. My endocrinologist, on the other hand, is negligent for not having made it clear to me before prescribing osteo-meds that he had never looked at nor received the entire report.

For the last few weeks, I have been trying to get a copy of the full report but the facility that did the scan is a clown show and they refuse to give me a printed version. I have a CD copy but my computer does not have a CD drive and I went to the library to use their computers, but their computers don't have CD drives either. Additionally, even if I find a computer with a CD drive, I'm not sure I will be able to read the files. The office mgr at the facility said that it requires special software.

I haven't had any fractures. I had my first scan in July 2019. I was in the process of moving at that time, lifting heavy boxes, carrying bulky items, etc. and in September 2019, I received a letter in the mail that said I had osteoporosis, but I didn't get a call from my doctor and frankly, I didn't think much of it. In December 2019, I went to my previously scheduled primary care doctor visit, and my doctor said, by the way you have osteoporosis, you might want to consider osteoporosis meds. I said that I really don't like taking meds and she then said that I should discuss it with an endocrinologist. Note, my doctor acted nonchalant about my t-scores and didn't explain them to me and I left her office still thinking it was nothing to "worry" about.

I already had an endocrinologist because I have hypothyroidism, for which I take 75 mcg of levothyroxine daily. When I saw my endo in January 2020, I told him that I really don't like taking meds and he said your bones are "horrible" and gave me know advice other than the standard, "walk, lift light weights, take calcium and vitamin D3" LOL and he recommended/prescribe alendronate (oral bisphosphonate pills). Before leaving his office, I said, "I always wanted to jump out of a plane. Do you think I still can?" To which he replied, "I wouldn't." My point is, that even when I was leaving his office, I still didn't understand how bad my numbers were/are.

I continued to do everything I had always done, meaning I was taking no real precautions because I really just didn't understand how bad my numbers were. In fact, this past fall, I dug up about 12 very established bushes, roots and all--that is some serious physical work--and other than the normal exhaustion from doing such a task, I had no issues.

I did a GLUTEN CHALLENGE this summer so I could get tested for celiac. Good news is I don't have celiac; regardless, I do have NCGS (non-celiac gluten sensitivity) and I also have 1 of the genes related to celiac so I avoid gluten. GLUTEN and celiac testing and a colonoscopy and digestive tract issues pretty much took up my whole summer so I wasn't focusing on osteoporosis. Too much other stuff on my plate.

I stopped the alendronate in July, right before my 2nd DEXA scan because it was causing my digestive tract issues, and my endocrinologist prescribed zoledronic acid (infusion). I took a 4-month holiday from bisphosphonates and reluctantly had the infusion in November 2021.

Then I started researching osteoporosis. That's when I found Dr. Brown's BetterBones.com website and found a list of tests that should, at the very least, be considered to rule other issues out. Note, my endocrinologist did not do any tests to specifically rule out secondary causes for osteoporosis. Additionally, in hindsight I have realized the very 1st day I walked in his office in 2017, based on my medical history, he should have ordered a DEXA scan for me. He has failed me as a doctor.

Eventually, I found HealthUnlocked and joined and I posted my t-scores along with the fact that I am 4'11" (note, I have NOT lost any height) and that at the time of my first DEXA scan I weighed 100 lbs. Someone saw my posted and commented that I should talk to someone because there is evidence that DEXA scans are inaccurate for smaller ppl.

Since then, I have been searching for info on this. Both Dr. Brown and Dr Lani Simpson seem to agree with this. Additionally, earlier this week, someone on this sight posted that she is small and when she entered her DEXA info into Dr. Ott's BMAD calculator her scores improved by 1 standard deviation. THAT IS HUGE.

I started searching for info on Dr. Ott and this BMAD calculator and eventually found it courses.washington.edu/bone...

Unfortunately, because the jerks who did my DEXA scans won't give me a printed version of the full report, I don't have the info to enter to figure out if my numbers would change. My gut feeling is they will. By how much, I don't know. But if all of my T-scores improved by 1 standard deviation (note, that is a BIG IF) my hips would both be osteopenia NOT osteoporosis and my lumbar t-score would be -2.7 which is really close to osteopenia (my lumbar t-score in 2021 was -3.7).

I'm not banking on my T-scores changing that much but before I continue taking meds, I want to have a better understanding of my bone density.

I was diagnosed at 50 and I am 53 now. I have great balance, I exercise daily, and I eat a balanced diet. Recently, I have upped my exercise program and tweaked my diet a bit to try to help my bones. The issue is if my numbers are higher than I was told then the bisphosphonates might be doing more harm than good. From what I have read bisphosphonates not only inhibit osteoclasts (the breaking done of bone) they also inhibit osteoblasts (the building of bone).

Mavary profile image
Mavary in reply to FearFracture

My Drs just tell you what is relevant. They do the tests X-rays and scans then tell you what is what .:I did ask my consultant about a thyroid test as that can cause Osteoporosis. But usually I trust them to know what they are doing. I’ve never been failed yet. Oh the thyroid test had been done when my bones first went. They did it again because I asked the question. So I see no reason not to trust them.

FearFracture profile image
FearFracture in reply to Mavary

I used to think that way too but I have had too many bad experiences to think they care enough about me to do a thorough job.

In theory, anyone can draw blood, get a lab to analyze it, and then look at the results to see if anything is high, low, or abnormal. That doesn't take a rocket scientist.

A good doctor should be more proactive.

My size is ignored by so many doctors it is insane. Decades ago, when I was in college, some sort of virus was going around and I got it. Note, it was not pretty. I was so sick I missed one of my exams and had to make it up at a later date. I went to the doctor and he prescribed and antibiotic. I took it and had a really weird reaction to it, so I made an appt with the University health clinic doctor. When I showed him the prescription I'd been given, he looked at the dosage, and said the amount prescribed to 100 lb me was what he would give to one of his 250 lb football players.

Every once in a while, I have had an excellent health provider. I say health provider because one of the best "doctors" I ever saw was a physician assistant.

A few other horrible experiences I have had:

10 yrs after having gone through menopause, I went to a female OB/GYN, I told her I had already gone through menopause. Note, for undiagnosed reasons, I went through a very early menopause. A few weeks after seeing this doctor, I got a bill in the mail for pregnancy test! I was furious. I called them up and read them the riot act, didn't pay the bill for the test, and never went back. They thought I was either stupid or lying to them. Who wants to see a doctor like that?

Additionally, every single doctor that I have seen over the last 20 years should have recommended that I have a DEXA scan. NOT one of them did. I even had one irresponsible doctor who knew all of my history, prescribe steroids for me because I was having pain in my upper back. She told me she was ordering an MRI for my entire back, but they only did an MRI of my lower back, but I was having NO issues with my lower back.

The steroids were short-term, only took them for about 10 days total, and I did what she said because she's the freaking doctor. Turns out she prescribe them "just in case", and at that time I had no idea that steroids are horrible for your bones. But she knew that I was very small, fair skinned, and had already gone through menopause, and she prescribed steroids "just in case" which is completely irresponsible.

So, NO, I don't really trust doctors. I think you are very lucky if you get a good doctor who really knows what he/she is doing and who actually cares about you.

Mavary profile image
Mavary in reply to FearFracture

We’ve got quite caring people here. The NHS is really pushed to the limit at the moment but they are doing their best.

AnnieW55 profile image
AnnieW55 in reply to Mavary

Yes we have and they are. I have no complaints about my treatment under the NHS. However, since a DEXA showed osteopaenia followed by a hip break and finding this site and inspire.com, I have become more proactive in researching my health conditions and not just accepting “Dr knows best”. It’s not a given even, with a Consultant, and GP’s can be amazing but they are General Practitioners.

You mentioned that your thyroid had been checked but has your parathyroid been checked? (It’s a different gland, responsible for blood calcium levels, next to the thyroid.)

Best wishes for continued health improvements.

Mavary profile image
Mavary in reply to AnnieW55

Yes as that’s the one I mentioned to my Consultant and they checked it again.

AnnieW55 profile image
AnnieW55 in reply to Mavary

That’s good - I only read thyroid in your post so I wondered if you knew about the parathyroid. All is clear now.

I know someone who had a prediabetic blood test score, which the doctor didn't even mention! Was he waiting for the person to becone diabetic, and then prescribe insulin?!

I was told I had become pre diabetic and to watch what I ate.

noRx4me profile image
noRx4me in reply to FearFracture

Your life history with doctors is similar to mine only the ones I had were literally combative. I’ve had so many doctors and nurse practitioners talk to me in a demeaning manor I’ve finally had enough. Like you I am petite 5’ 95 lbs, and they never take that into consideration when prescribing meds. I haven’t taken any Rx for over 30 years and don’t plan to in the future under any circumstances ( just my strong feelings on that and I DON’T encourage others to do the same). My path for healing, for me, works best with chiropractors or acupuncturist. I’ve never been talked down to by any of them and they treated me with respect as well as were truly interested in helping me. My acupuncturist helped me with hot flashes during early menopause at 42 and after 3 visits they vanished - YMMV

I sometimes wonder if I were taller and looked older if the doctors would have treated me differently 😉

So glad you mentioned acupuncturist and chiropractor, which reminds me that there are natural healers out there who don't insist on unnatural medicine.

FearFracture profile image
FearFracture in reply to noRx4me

It's strange, isn't it, noRx4me.

You're standing right in front of the doctor. There is NO WAY they can't see that you are small and yet for some reason they don't take it into consideration. Before my colonoscopy, I made sure to tell the anesthesiologist my exact weight because I wanted to make sure I would "wake up" afterwards :-)

Do you have osteoporosis/osteopenia? If yes, what are you doing to try to reverse your bone lose, and is it working?

noRx4me profile image
noRx4me in reply to FearFracture

You were smart to speak directly with the anesthesiologist. My uncle was small and they didn’t take that into consideration. He ended up in a week long coma from a colonoscopy. Anesthesiologist remarked after the fact that he wasn’t aware of his weight etc. He came out of the coma but ended up with advanced Parkinson’s and died 4 years later.

I was originally dxd with osteoporosis a few years after menopause 2002-ish maybe -2.0 or -2.5. Dr then didn’t give me much info and place where I received dexa scan wouldn’t give me copy of scan even though I paid out of pocket. Rx that was offered was Evista. I read about side effects and decided against it. Dr blasted me and said “You’ll never get better with diet and exercise “ I never returned. Recently my acupuncturist suggested to get another dexa just to see where I was and as of September 2021 I’m at -3.2 hip and -3.9 lumbar. No history of fracture or broken bones and no secondary causes or other mitigating factors - heavy drinking, smoking, soda etc. I’ve been under stress last several years, husband has stage 4 prostate cancer with mets and lots of other life situations. I did visit a rheumatologist but he was so condescending. At least I got an order from him to go for physical therapy.

I am taking every conceivable supplement and eating more yogurt and kefir. I walk daily at a fast pace for half hour, sometimes 2x a day. I lift weights and follow Susan Brown BetterBones.com as well as Margaret Martin melioguide.com. I did visit the physical therapist for awhile but I think my advanced osteoporosis scared them even though I sailed through all the exercises they gave me. I may consider Osteostrong or the Marodyne device in the future. I won’t know if any of this is working for a year or 2 and I’m not sure if I’ll even get one again.

All in all I’m determined to keep fit and strong. Osteoporosis is a natural aging process, not a disease. Some people advance quicker than others. Mine just happened quicker due to early menopause.

FearFracture profile image
FearFracture in reply to noRx4me

Do you know why you went through early menopause? Mine was for undiagnosed reasons. I was 32 when I had my last period. In retrospect, I probably started menopause between 25 - 27. I was skipping periods, but I was under a lot of stress, so I really didn't worry about it. Besides, not having a period was/is quite nice :-) so I didn't rush to the doctor to figure anything out. They ruled out Turners Syndrome early on but other than that no one helped me find an answer.

I'm a bit miffed and mad that none of the doctors I've seen over the last 2 decades ever suggested I get a DEXA scan. I too would have paid out of pocket had anyone recommended it.

Have you heard about Dr. Ott's BMAD calculator? courses.washington.edu/bone...

I finally got access to my full DEXA reports but I'm not really sure what I am supposed to enter in the BMAD calc. I only have my numbers in g/cm2 form.

I took meds (alendronate for 1.5 yrs and had my 1st zoledronic acid infusion in November 2021) partially because I didn't know what else to do, and when I asked my endocrinologist if there were any natural ways to reverse osteoporosis, he just gave the standard, walk, lift light weights, and take calcium and vitamin D3 and maintain a healthy diet. I had been doing all those things prior to my diagnosis so I took the meds.

I should have started researching reversing osteoporosis back in 2019 when I was first diagnosed, but I didn't. It was really this past summer/fall that I really dove in, but I was focused on ruling out Celiac, which although I have one of the genes for Celiac and do have NCGS (non-celiac gluten sensitivity) I don't have celiac. I do avoid gluten because of the sensitivity, and since I have one of the 2 genes, I could develop Celiac in the future so just best to avoid it.

Although I was eating a healthy diet, I'm now eating an even healthier diet. A few months ago, I was drinking diet ginger ale daily. I had given up carbonated beverages pre-covid, but during covid I caved and started drinking a little diet ginger ale daily. I was also drinking a few cups of half caf coffee daily, now I have completely given up coffee so no decaf or regular. And after reading the prune study and almond study, I have added 5+ prunes to my daily diet and I eat one serving of almonds 5 days a week. I've also added vitamin K2, and I can't help but wonder why the doctor who prescribed osteo-meds to me didn't recommend vitamin K2 2.5 years ago. Additionally, I have joined a gym to up my weight-lifting game. I had been lifting light weights at home, but all the research I have read clearly states that isn't nearly enough. Also, I used to take one long walk daily. Now I take 2, 20+ minute walks to make sure that I keep my pace up. One days that I go to the gym, I get one of my walks in on the treadmill. Today, I actually walked a 14 min 54 second mile--that is really good for me.

noRx4me profile image
noRx4me in reply to FearFracture

My mother went through early menopause when I asked her so I never gave it a second thought. She had me late and I never had kids. I’ve always been super athletic, low weight so a possible cause but my periods were always on time, never heavy and only lasted 4 days. OTOH I suffered from horrible migraines for 45 years. Nothing helped, drs couldn’t find a reason so I lived with it and the never ending nausea that accompanied it. I’m sure another huge factor in why I have osteoporosis. Good thing migraines stopped 6 years ago. Yes I have heard about Dr Ott and used the online calculator to find my real BMD. It’s still bad but not nearly as bad as what the dexa shows.

Keep up the good work on walking, that’s a great time! I walk/jog even though they say not to with osteoporosis. Sometimes I do a full run for 2 miles.

I think we now can find the information we need to stop or reverse the bone loss. It’s not like it was 20-25 years ago. Like you I should have done more research back then but life got in the way.

The only thing I can’t give up is coffee. I drink only 2 cups with lots of cream, otherwise I eat Mediterranean diet of sorts, whey protein shakes every day and full fat yogurt or kefir. I like cheese but never drink milk.

I really think every avenue must be explored. I take more than the usual supplements for bone health and research every single day. I learn a lot from people here and on the Inspire site Bone Health and Osteoporosis. It’s comforting knowing you are not alone in this journey and we are here to help one another 😉

The doctor office should give you a copy of the scan. Why don't you ask them?

If you do find a CD drive, the web may automatically bring up software choices you can use to read the report. Can they email it to you? Maybe they never produced the full report. Perhaps if a doctor requested it, they'd feel pressured to provide it. I think you can buy a CD drive that connects to your computer with a USB cord.

I agree it is important to find out WHY your bone loss is occurring, if it seems extreme and you are not really old. Thru testing, it was found that i was losing calcium thru kidneys - maybe my entire adult life. My bones were very bad in my 50s which my Drs. said was not normal for someone that age. So i also take a drug (indapamide) that helps my body retain calcium. I take Jarrow Bone-up as my calcium supplement, and the Reclast.

Mavary profile image
Mavary in reply to purpleraindlk

That’s really bad for someone of your age. It’s good they can do something about it.

Hi there, At the end of the day, you have a choice and it's your body, so nobody should bully you into having these injections if you don't want to have them. Whatever your decision is, Good luck.

I was diagnosed with osteoporosis about 5 years ago I refused to take the meds but was advised by a natural health person (Adam) to tave vit d3 and k2 and plant based calcium, it comes in granuales i have scans every 2 years and mine has not gotten any worse

A natural health person sounds like the way to go. So glad you mentioned it in your post. Homeopath types don't prescribe big pharma's meds. I once read that osteoporosis is a result of age, usually, and big pharma has found a way to turn that into a disease.

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