I’m not sure I agree. (Although I’m not a medical professional!!) Your scores are very very low for someone so young. And your scores are not going to get better on their own.
I am personally a huge proponent of these drugs. I’ve been taking one or another of them for about 20 years. (I’m now 75 and had an early menopause.) The rate of complications from the drugs is very, very low, and the benefits are very, very high. I do not want to have a broken hip, ever. Once you’ve broken a bone, the path from there is mainly downhill.
Thanks. I’m very curious what the endocrinologist will say. Regardless, I might get two opinions. There’s no family history of osteoporosis but there is quite a bit of heart disease and I’m not dying to increase any risk of that. All of the women on both sides of my family are tiny people and live a very long time. As far as they know, no osteoporosis but they say they were never scanned!
The heart attack history is the men on both sides.
My body type is completely different from yours, @homerdog–I come from Eastern Europe peasant stock–tall (although a few inches shorter now at 76) with broad shoulders and big hands and feet. I did break my arm just before the pandemic (stupidly checking my phone on a sidewalk when I tripped and fell off the curb) and all I needed for it to mend was to wear a sling for a couple of months.
However, I lost the long Covid lottery (first infection in 5/22) and had terrible breathing issues (now resolved) followed by terrible sudden-onset rheumatoid arthritis. I am a zillion times better now but I took a ton of Prednisone and was pumped full of IV and inhaled steroids during several ER visits and hospitalizations.
A routine (my first at age 73 or 74) bone density test showed osteoporosis. I was really surprised. I’ve been taking a Fosamax pill one day a week for a year or so. It has no side effects for me. I see the rheumatologist in a month and will ask him when a new bone density test is indicated.
The rheumatoid arthritis is treated with a small weekly dose of methotrexate, an immune suppressant. It appears to have helped a lot after almost a year. I do have to wear compression gloves and leg sleeves or knee-highs most of the time but I am so, so much better.
I found I had more faith in the meds or no meds decision after seeing the endocrinologist because instead of a primary car doc just seeing the dexa and saying “ yep you got it, time for meds) the endocrinologist asked many more questions, did more labs, did some scans, etc and THEN the recommendations made more sense to me.
glad you’re feeling a bit better. I do worry about taking medicine also because I tend to be really affected (for lack of a better term) anytime I take meds. Even if I take Nyquil, I need to take a kids’ dose or I’m knocked out way longer than I should be. Lol. I know side effects from osteoporosis meds should be few and far between but I seem to get rare side effects from almost any meds I’ve been prescribed over the years. And I do have TMJ on and off so Fosamax is not appealing.
yes. I agree. My OBGYN was great. Agreed it was fine with her to see the endocrinologist. Had a referral all ready for me and we are doing blood work next week. I’m friends with my OBGYN and I know she has osteoporosis and is about my age. It was weird for me to bring it up with her in this recent conversation since she had just read my labs and it wasn’t time for me to say ‘hey what did you do?’ but I might be able to do that another time. My guess is that she went to this endocrinologist she suggested for me.
I wholeheartedly support your seeing an endo. My OB/GYN was pretty useless and, after I complained about his lackadaisical attitude, he referred me to someone who is really great.
I had sort of an opposite experience. My GP sent me to an endocrinologist and she and I did not gel at all. She was being very pushy about me going on drugs, and didn’t even try to put together a FRAX score (which when I did it was low). When I went back a second time, after taking Vitamin D, she just said well that didn’t work, now you have to take drugs. I mentioned this to my GP, who was much more supportive of an organic approach (increase weightbearing exercise, calcium, vitamin D etc.)
I have a friend who in her mid 50’s broke a bunch of ribs water skiing. Turned out she had very low bone density. She has been through the whole process now, took the first type of drug, went on a drug vacation, her numbers plummeted and now she is on the second type of drug. Even though she was younger than me when diagnosed (and I honestly don’t know what her numbers were), her risk was much higher at that point as she had had a series of broken bones (the ribs were not the first but were the ones that made them check her bone density.)
I recently moved and am going for a bone density soon and will be seeking a new endocrinologist. I am hoping to find one I really like.
One other note, the old holistic treatment of calcium supplements are being debated now. Many doctors feel that you should not take them as they ae now considered a potential factor in heart disease.
I totally get your medicine side affect issues. My daughter often gets weird reactions to drugs and has also had bad TMJ.
I have an appointment with an endrocrinologist, but not till December! Also plan to talk to the Better Bones book guy - I did read it. And at least from what I can tell there’s only one piece of bloodwork that might be off. I’ve done weights and hiking for years, but I wish I had more of a peasant build. No heart disease in my family so I am less worried about that.
@homerdog honestly you barely have osteoporosis. With higher scores like that you do have the option to do mor holistic approaches, at least for awhile. I think it can be difficult long term if you start meds too early. Ask the doc about a long term plan because every medication has a time limit and if you start too early, your run out of time with the meds.
Loss of bone density happens to all of us after menopause, I was told. We are living longer than our ancestors!
I have been talking to Keith McCormick, author of “Great Bones” for 20 years. His earlier book was “A Whole NOdy Approach to Osteoporosis” and much of that book is updated in “Great Bones.” McCormick’s current spinal score is, I believe, -3.3 and he is not on meds.
I spent years trying to get on meds and could not tolerate them. Cancer made bones worse, and COVID happened- and I fractured a few vertebrae. Pain and permanent limitations. I am strongly pro-med for scores over -3 or maybe -3.3. But given the issues with DEXA variations, -2.7 might not even be osteoporosis yet. Of course it is a spectrum not a line, but still…
Tymlos got me from severe to borderline, for spine and good result with hip too. I did 4 months Evenity for an extra boost and am now on a 20% Reclast every three months regimen. I got on Tymlos by starting at a low dose and have done the same with every med. For severe osteoporosis, I think the side effects are nowhere near as bad as fractures, at least in my experience and I am sensitive to everything.
I’m exactly your size. We are nothing alike re running/pilates/weights. I do walk and practice yoga.
I had my first DEXA in 2005. I was 51 at the time.
In 2005 the femoral neck was -2.8; hip total -2.3.
In 2022 the neck was -3.2; hip total -2.0
In 2005 my spine was -2.6.
In 2022 my spine was -2.8.
Considering it’s been a 17 year time span between the first one and my last one, I’ve done well. There have been some fluctuations on bone scans between my first and last one - sometimes slightly higher/sometimes slightly lower - but nothing dramatic. I’m due for another bone scan this year, so the numbers may change dramatically. Obviously I hope not.
Anyway, I’m on no medications. My doctors indicated I could if I wanted but there has been no push to do so.
Like you, I’ve haven’t broken a bone yet. I’ve had some nasty falls in the last 19 years, including a couple in the last year. I’m lucky.
I’ve no words of wisdom for you other than to quote @abasket:
we are all different including our bodies and medical/health situations. Osteo isn’t a one size fits all situation.
This may have been covered - has anyone done the low vibration plate (that you stand on) for osteoporosis? I’ve been following physical therapist Margaret Martin on YouTube (great osteo tips) and she seems to recommend that…
@BunsenBurner I have read that a 5% change in DEXA is statistically significant. (See BetterBones.com). I have kept a chart of my DEXA’s since 2001 and they jump around. I look at trends over time, not one or two DEXA’s.
If a person has three DEXA’s in a row, on the same day, the results will be slightly different. There are many factors that cause variability, including positioning and “area of interest.” Technician skill may vary and radiologists’ interpretations my not be 100% consistent.
Sometimes treatment decisions are made with scores like those of @homerdog and they the next DEXA shows they are not in osteoporosis. And sometimes it shows they got worse. This is one reason many of us don’t jump to treatment. Once we hit -3.0 it doesn’t really matter. Monitoring Changes in Bone Density (sagepub.com)
I think this is a reason why I’d like to wait on meds at least until I do another scan (which my OBGYN said should be in two years). I can’t imagine I’d have some huge plummet in just two years, especially if I’m taking care of myself and trying to incorporate even more calcium and D etc. Of course, I will see what the endocrinologist says but I’m finding it hard to believe that mine is some dire case that needs to be medicated right away.
I have chosen to wait on meds. I will have another scan soon and will reevaluate based on the results. I have had several incidents in recent years where my bones could have broken but did not. Ribs, foot and two toes (one on each foot) have been hurt but X-rays revealed no breaks. I also hit my elbow hard when I slipped on black ice; no break. I feel comfortable at this point without meds, but I don’t rule them out for the future. I’m hoping that there will be advances in the types of available meds as time goes on. I am prone to side effects, so that is always part of my decision.
It can be worthwhile (and an endocrinologist May do this - mine did) to do particular labs to show your calcium and D levels. I was taking supplements(ob/gyn and pcp recommended) and then after labs, my D levels were actually too high and calcium was also high enough that my
Endo recommended stopping D and only taking calcium a couple times a week because apparently I’m getting enough through food.
But as said above, we are all different!
It can be hard when you are that person who does a lot of weight bearing excercise, eats well and calcium rich foods, etc etc - but the diagnosis is still osteo! For me after years of putting it off I finally caved in to meds - the improvements were so slight over the years i just felt I needed intervention- but def took time to get there
I’ve been assuming that many osteoporosis cases I hear about is due to better ability to diagnose…not higher percentage of incidence… true? ( to be fair, I do realize that one factor is that I now know more post-menopausal women that I did in younger years.)
Looks like the late 1990’s that dexa scans were given the stamp of approval for use to measure bone density. My mom never who died in 2021 at 88 was never offered one. Nor my sister who is 70.
