Bumping up this thread because I had a second DEXA scan after last year’s showed osteopenia in hip and osteoporosis in spine. Went from -3.1 to-3.5 for spine. I’ll be 68 this year. (How is that possible?!) I’m basically healthy though I’ve had some weird stuff going on in the last couple of years. (Minor ear pain, slight peripheral neuropathy with no obvious causes.)
I’ve read the whole thread and I skimmed through the recommended book last year, but I really despise doing my own research. My PCP has been pushing medication, but I’m not sure if she’s qualified. Should I just ask her to recommend an endocrinologist?
And how is everyone doing? I hope @compmom is doing better.
I was taking vitamin D for several years and added calcium for about a year. This was per my PCPs recommendation, instead of the medication my Endocrinologist wanted to put me on. (she wrote in my “permanent” records - patient refused treatment). I recently stopped them when I started reading all kinds of stuff about calcium deposits causing heart issues.
I have completely switched from using a stationary bike (which is not weight bearing) to walking and continue with regular yoga (avoiding the poses that put stress on your back).
I am due for a new scan this year (skipped last year). I moved so it will be with a new lab and new doctors. I am only 63 and have been considered osteoporosis for several years already.
@mathmom unfortunately my expertise on osteoporosis has only grown
I recommend an endocrinologist. A PCP will probably recommend a bisphosphonate or Prolia and you need Tymlos, Forteo or Evenity.
I highly recommend “Great Bones” by Keith McCormick, a chiropractor who has done meds and natural approaches himself. And a YouTube video by Dr. Ben Leder entitled “Combinations and Sequencing Approaches to Osteoporosis.”
MayoClinicconnect has a very active osteoporosis forum. Feel free to PM me.
My husband has high cholesterol (runs in his family). They did a heart calcium scan for him and it indicated no buildup. So, his cholesterol is not effecting his heart and he can stay off statins!
He was looking into this and discovered that calcium supplements may cause this issue.
@mathmom you might have read his first book, “A Whole Body Approach to Osteoporosis.” “Great Bones” is new and is 700 pages. It has very thorough info on both medications and integrative/natural approaches.
I don’t think I expressed a strong opinion. A score of -3.5 for spine generally needs medication. I mean it’s standard, not an opinion The anabolics work and you can go all the way back to osteopenia. IF you wait, not only does bone density get worse but bone quality can reach a point where it never improves despite gains in density.
The problem with PCP’s is that insurance tells them to do “first line” meds like Fosamax or Prolia. These do not actively build bone but instead stop or reduce bone turnover so you gain density but it is not quality bone. Plus, they interfere with the effectiveness of the actual bone building meds if used later.
Prolia is very hard to get off of if you do more than 2 or 3 shots. There is a quick rebound where bone density plummets and fracture risk shoots up so unless you do Reclast you are even worse off. My docs don’t use it at all but a lot of PCP’s prescribe it.
I won’t say anymore here, I fractured 3 lumbar spine with a score like yours and it is very limiting. Happened in a second at a time when I was feeling strong and invulnerable. A good endocrinologist is your best resource and McCormick can consult for $350. He will say the same thing: you need meds !
Yes, I have been convinced I need meds, and it’s good to be clearer about just what the problem with Prolia is. I’m still waiting to talk to my PCP, but I think she will call back some time today. I don’t feel invulnerable, but I want to be able to continue to do the hiking I’ve been doing now that we are all mostly retired and have time for it.
Osteoporosis is my most important health issue. It’s also something that I treat aggressively. I did Fosomax for ten years, then an estrogen patch, then Prolia for the last several years. Also, weight lifting is important. Walking/running is good, but you also need to lift heavy things over your head. It really makes a difference.
The complications we hear about these medications are rare. The benefits they provide are huge.
My primary care physician said calcium scans have been talked about at all the conferences this year and are the “hot thing”. Apparently, a negative result is a good thing whereas a positive one may or may may not indicate a problem but can bring a lot of worry . They’re not covered by most insurance. AND I walked out of my annual exam with a script for one.
I don’t know if taking calcium contributes to this or not. Sounds like the jury is still out?
I read a book by John Neustadt, MD called fracture-proof your bones. It was recommended by a cardiologist. He recommends a supplement called Osteo K. It contains MK4 (from product description : Research on MK4 (45 mg/day taken in divided doses) shows that it builds stronger bones by promoting healthy bone density and bone matrix, which are associated with reducing fracture risk). I have started taking it, although I take the lower calcium dose minis due to my propensity to form calcium kidney stones (I focus on lower oxylate calcium food sources). Time will tell if it’s helpful. I haven’t started taking meds, although I am open to it in the future if I feel that the side effects outweigh the benefits for my personal health situation.
Same here. I had a heart calcium scan in 2014 and one in 2021. Great results have kept me away from statins.
I too have osteoporosis and have managed to stay away from medication. My scores have remained stationary or gotten slightly better. It makes no sense.
I urge you to read this thread and CONSIDER what everyone says but also to make decisions based on you, and your docs opinions. We just don’t know all the health nuances someone posting here has.
Osteo is also my main and only health issue. As mentioned before I was diagnosed several years ago and also just could not get myself to start the Fosomax (I think that was it) recommended. I picked it up from the pharmacy and about a year later through it away unused. I was too leary. I have been taking calcium and vitamin D for a few years - at times more regularly than others.
About a year ago I started to become more cognizant and fearful thinking about how I may be in good health now, what happens if I break a hip or otherwise in my 70’s/80’s??? I’m now 64. It scared me that that result was more likely for someone with osteo.
I asked to see an endocrinologist and he did a thorough physical and verbal exam and blood tests. I average about anywhere from 8-12 miles a day on my feet and do lots of weight bearing exercise. Some weights. Clearly that wasn’t enough!
He recommended Prolia and I had my second injection last week. So far absolutely no side effects. Two weeks before my injection I get a blood test to check calcium/D levels. I no longer take calcium daily because my numbers are high enough via my food intake. I take one maybe 3 times a week. It has a little D in it. I now take no additional D because actually my D was too high.
Which leads me to say that calcium/d/exercise is not always the right recipe or even good for you. You need the guidance of an expert! I am not trusting of all docs but I DO trust the ones I have a good relationship with. I choose to listen, ask, think and then proceed.
I hope I didn’t wait too long. I believe I’ll take the Prolia shots 2x year for 5 years. Will have dexas every 2 years to monitor scores.
Adding that one moment of “wake up call” for me was talking to my dentist when I was considering Prolia. I mentioned it to him (some of the osteo treatments can cause jaw/dental issues as a side effect - again, quite rare).
He looked at me and said, well, it’s true that osteo treatments can result in some jaw/dental issues. But “being 80 years old and not being able to recover from a broken hip seems like worse odds and worse results - you have to choose the lesser of two evils”. He said it so matter of factly - which it entirely was!
He knows I take it now, I am encouraged to have my dental exams pronto twice a year, I’m to reach out if I have any tooth/gum/jaw pain (you want to be on top of any possible mouth related infection). I can do that!
It’s not clear to me that ingesting calcium necessarily leads to calcification of the arteries and related cardiac risks. What is it that makes the calcium “stick?”
Does anyone have a reputable source that discusses this?
@abasket if you stop Prolia there is a serious rebound that can cause you to end up worse than when you started. This is well-known. My doctor at a major teaching hospital doesn’t prescribe it and jokes that when he is retiring he might, because then he won’t need to deal with stopping it for anyone.
If you only do 1-3 shots of Prolia, a bisphosphonate can address the rebound. If you are 80+ you can maybe take it for life and not deal with rebound.
I am surprised that folks here are doing anti-resorptives when anabolics are needed for scores that are less then -3.0 or so. Maybe this thread has a lot of people with borderline or mild osteoporosis.
With a -3.5 I would be very careful with weight lifting.
With 7 spinal fractures I can still walk 20 miles in a weekend but I can barely lift a seltzer bottle. Tymlos took my spine from -3.7 to -2.5 in 18 months.
I recommend the Mayo Clinic forum for the best info and sharing of experience.
I have my dental exams FOUR times a year. The jaw pain I experienced while on Fosamax made it almost impossible for me to even chew something like hamburger. Forget something like a steak or chicken. That WAS impossible.
Not being able to eat is really a problem! And my dentist and doctor just thought I was nuts…this was before this was a proven thing with these med. I stopped taking the Fosamax and it took about 6 months, but my jaw pain ended and I could chew food again. It was not a fun time.
I do think treatments have gotten better since my experience…but I will never take Fosamax again.
I would encourage people here to share their story or experiences but not to judge what you do or do not know about others situations/decisions. It’s clear that decisions for this health condition are already tough. No one needs a dose of doubt or guilt or about the decisions they have probably weighed hard and long.
about the decisions they have probably weighed hard and long.