I have chosen not to go on meds, based on a very negative experience with my mom & meds, as well as research and personal preference. I empathized that last part because it really is a very personal decision. Were I to decide at some point to take meds (I don’t rule it out), I would do testing before I started to determine the best medication for my situation, and I would monitor by repeating tests while on the meds. You can order your own tests by the way. I found excellent information in the book Great Bones, by R. Keith McCormick, DC. Every one of us has a unique set of circumstances, and a lot of doctors have an “average person” point of view. It’s wise to do research so that you can ask your doctor the right questions.
For exercises, I have several books by a physical therapist named Margaret Martin. I used her explanations to come up with exercises I enjoy that also strengthen my hips (all done with free weights & many incorporating a fitness ball- squats, lunges, hip raises, side lunges, etc). I have been doing P90X3 for years, and I have modified a number of exercises to focus on my hips (for example, I don’t do things like plyometrics, so I will substitute something like rolling hip raises on a fitness ball). I have been exercising for decades, so I am pretty good at researching & finding things that help once I realize I need to work on a particular area.
The PA I see at my doctor’s office used to work for an endocrinologist group. She said that many of them are quite sure they know everything, and it’s a win to find one who listens to the patient. If someone has a good one, that’s awesome.
DR. McCormick makes the point that bone density itself gives only part of the picture. You can increase density through meds but have bones that can easily fracture. You can have Dexa scores that indicate osteoporosis & have bones that won’t necessarily fracture easily. The key is to strengthen your bones as much as possible. He includes examples in his book of people who do need meds (he did), along with an explanation of how to monitor their effectiveness.
I have osteoporosis and I am on meds though I resisted for many years. I do tons of weight bearing exercise and eat the suggested high in calcium foods. My calcium and D levels are very good.
I really like my endocrinologist. He listens, he is involved in research and he precepts training endos.
To be fair, you’re right that everyone’s situation is different in so many ways. But as an endocrinologist, they also see those who aren’t so fortunate. Who do break bones and have their quality of life changes…or ended.
I appreciate that they make me aware of worst case scenarios while being realistic in my personal outlook. If and when I did refuse meds I’m sure they thought I was making a wrong decision - and so if my chart notes reflected that I’ll assume it’s written because of their expertise.
To be honest, I didn’t feel great about not taking meds but I just hated the options. And now I don’t love it but I also finally decided that while I’ll continue to do the healthful eating and exercise I wanted to be proactive while I still had some “youth”. That’s my choice that feels right. And I am seeing improvement in my scores and 2 years in, no side effects.
Yes. Two of my dexa scan numbers were -2.5 and a few more were in the osteopenia range. Menopause at 49 but doc said that’s not main cause (I’m 58 now). She said 49 isn’t particularly early menopause. I’ve always been small boned and thin but have worked out my whole life. I’m so curious what the results of this next round of testing will be because maybe my “normal’ bone density is just low and that’s normal for me. No broken bones ever. Like I said, thyroid normal and low levels of calcium and D but within normal range.
I just was curious what most of you have had tested before you decide on meds or not.
In my otherwise unhealthy self, the one test I passed was the bone scan. And still the doctors are all over me to get scans (because of other drugs I take, but insurance will only pay for one every other year). So they feed me drugs that will cause osteoporosis and then are mad when I don’t have it!
I really think if they say I have it that I will then stop taking the other drugs as my first choice. I didn’t spend all my youth drinking milk and eating Wonderbread (to build strong muscles and bones) to have it go to waste!
I got my first bone scan ten years ago, and I was 8 years into menopause at the time. I had osteoporosis in my hips and osteopenia in my spine. My numbers were just into the osteoporosis range (still are based on age), and my doctor talked to me about meds. I planned to live for many more years, and my cost/benefit calculation was to put off meds. I may need them later, and I am well aware of the risks involved in long term usage. My mom had some issues with meds that are very important considerations for me. I have had scans every three years since, and yes, I have lost some density over the years. I’ve had a little gain, as well. My spine has not progressed to osteoporosis.
I have a couple minor health conditions that influence my bones and my decisions. In addition, I have had a couple relatively recent instances in which I hurt myself and thought I might have broken a bone. I did not, which gives me some confidence that my bones may be less dense but are still relatively strong. My mom increased her density with meds, but her bones were actually not stronger & she had some very bad breaks.
I will continue to monitor my bone density, exercise, eat a healthy diet, and continue my reading about bone health. Like everything in life, we make the best decisions we can make, and we sometimes have to choose between imperfect choices.
I was at the doctor’s today and expected to hear about drugs I should be on as my dexa score showed a decrease in bone in the spine (-2.8) but she just said to increase my calcium and we will recheck it in two years. I’m good with that.
There’s a big difference between -2.5 or -2.8 and, say, -4.5 (obviously). I have a friend at -4.5 who is not doing meds and takes care of two small grandchildren. I worry about her.
I have been seeing McCormick along with my wonderful MD for 20 years. It is important to note that, although his first book is entitled “A Whole Body Approach to Osteoporosis”, McCormick himself took meds: Forteo then locked in wtih FOasamax. His current spinal score, I believe, is -3.3, his preferred cutoff for meds.
Ostoporosis has no symptoms. I had 3 thoracic fractures from a traumatic fall in 2006. This put me at risk of more fractures, regardless of cause. I tried for years to get on meds. I saw an immunologist, tried to get into a patch trial etc. I fractured three lumbar with a minor unwise movement. I was able to tolerate Tymlos by starting at a low dose and never took the full dose. My osteoprosis in spine gained 20% and went from severe to osteopenia.
My other friend went from -4.6 to osteopenia on Evenity.
My doc allows low doses of every med. I got an infusion of `1 mg, twice, last year, of Reclast. Usual dose is 5mg all at once. I had IV hydration and hour long infusion, also thanks to my doctor.
If anyone does need meds, it is possible to work with your MD to make them bearable. If not, find another MD! My fractures are permanently painful and disabling and I thought I was absolutely fine before my lumbar ones.
Doctors often want to put folks on Recast or Fosamax first. These meds can decrease the effectiveness of the actual bone builders, as McCormick explains in his book. Insruance companies like these meds due to lower cost.
Yes, the default to those drugs as required step one ignores the fact that not all people actually benefit from those drugs … in fact, they can be detrimental for some … because not all osteoporosis is caused by the same thing. That’s why I really like Dr. McCormick’s book. His information is pretty technical at times, but I go back to it every so often to learn a bit more. I am not at needs-meds status yet from my POV, but I want to be armed with knowledge so that I can act from an informed perspective should that time come. For me, that would most likely be in response to density changes.
I think menopause is probably the main cause for most of us. Docs test for other things to exclude them (like parathyroid issues) but age alone is enough. My mother had a diagnosis of “age related osteoporosis.” Mine was especially bad because cancer drugs put me in super menopause with no estrogen in my body. But normal menopause lowers estrogen enough to affect our bones too.
I share my fracture experience because I thought it wouldn’t happen to me. Now I have to slide pots along the counter to get them to the stove, drag laundry on the ground, get help to open a window etc. At the time of fractures the pain was terrible but now I can walk a long ways and am back to tai chi. I credit the meds but totally understand anyone above -3.0 or so trying different things.
Mine was likely due to massive consumption of steroids due to serious long covid (terrible asthma and breathing issues followed by rheumatoid arthritis). I’ve been on fosamax for almost a year and hope to be off it after another bone scan soon, and zero steroids for over a year.
Well, I had my first DEXA scan today since starting AIs and, after only two years (I started on Tamoxifen, then ended up with a hysterectomy, then switched to Anastrozole), have reached borderline osteoporosis. My oncologist said something about infusions that might help? Ugh, if it’s not one thing, it’s another. I thought I was doing pretty well, too - I eat yogurt every day, walk at least three hours every day, dragon boat, etc, so I had thought my diet and exercise were decent. Apparently not!
I agree. I had my first test 2 years ago and know that it was ‘fine’ but didn’t pay attention to the numbers or what they meant. You all seemed to know the numbers and what was good and bad, so today I went into my file and looked them up (not knowing if -2.5 was good or bad). Turns out my numbers were -0.5 to -0.9. I’ll have them done again this fall.
I still think the first prescription should be for 1 pint of ice cream per day, not more pills.
For some of us that good diet and weight bearing exercise still lands us in osteo land. But perhaps it would be worse if we DIDNT have that eating and fitness routine in our lives!
This occurred to me, too - how bad would it be right now if I weren’t eating a ton of yogurt and exercising daily? That’s a scary thought indeed. It still feels so discouraging, though.
This is only anecdotal so ymmv, but I dropped into the osteopenic range after cancer treatment (chemo and aromatase inhibitors) but stayed at the same score for 15 years. It hasn’t gotten any worse. I hope the same for you. Nutrition and exercise are part of the picture but hormones play a much bigger role.
@worriedtoomuch sorry I should have clarified. Most cancer patients have infusions of Reclast or Zometa (both are zoledronic acid) to prevent bone loss, and these meds also have some protective value versus cancer spreading to bones.
My endocrinologist did not want me to have these infusions because of my afib. Not a typical situation at all. (Since then that risk for those with afib has been debunked but oh well).
McCormick is a chiropractor who is an expert on osteoporosis. He has written two books: A Whole Body Approach to Osteoporosis and Great Bones (more recent, 700 pages!). He covers regimens that are more “natural” and suggests -3.3 as the cutooff where meds are needed. I would probably start at -3.0 if I could have. ( fractured at -3.7 (spine).
Osteoporosis, in my view, is itself somewhat natural" since we are living longer!
Tymlos is daily injections at home, Evenity is two shots in the office, and Reclast is an infusion at an infusion center. So I have actually never taken a pill I would not be safe without these meds. Once you are in the -3’s or especially -4’s safety is a real concern.
But most people on this thread aren’t at that point. McCormick does consultations for $300+ and $85 thereafter. His books are helpful for those who don’t need meds and those who do. Keith MCormick, Osteonaturals.
I would not be safe without these meds. Once you are in the -3’s or especially -4’s safety is a real concern.