Newly diagnosed - mortality rate ques... - Osteoporosis Support

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Newly diagnosed - mortality rate questions

14 Replies

Greetings! I'm a 63 year old woman, and like many here, have always considered myself healthy, fit and very active. I'm going to my primary doctor tomorrow to review the Dexa scan results which are -2,5 for the lumbar spine and -2.6 for the femoral neck. Total hip score is -1.6. Searching through the internet has left me scared and confused, especially after reading about the high mortality rate if you break your hip; being wheelchair bound, chronic pain, etc... Are any of these save your bones type of programs trust worthy? Is there fear mongering that I'm buying into? Or can I only expect to live another 15 years??? I'm not even sure yet what these numbers mean - guess I'll find out tomorrow.

thanks so much xxx's

14 Replies
Kaarina profile image
Kaarina

Hi Sakimura, To me your dexa scores are not too bad at all. I would not be over worried if I received those results after a DEXA scan. I should think with some supplements if you are not taking any already, getting enough calcium in your daily diet and taking a Vitamin D3 supplement daily along with daily exercising you will be able to keep your scores from deteriorating. Worth a try anyway. :)

What happened that prompted a referral to have a DEXA scan?

in reply to Kaarina

thank you Kaarina for your reply. I've had three fractures within the past 10 years that were sports and accident related - hands & feet. Not fragility fractures according to my doctor, but he recommended the test anyway. As a young teenager I broke my arm and wrist horseback riding, so I have history.

Kaarina profile image
Kaarina in reply to

Thank you for the extra information. As you say, you do have history of fractures etc and I am sorry to hear that. Please do not worry so much. It is not always a good idea to do lots of searching on the internet. You have time to weigh up the pros and cons of what is suggested to you after your appointment. There is no need to make any rash decisions immediately. Please do let us know how you got on and I am sure more people will reply to you with help and advice.

Met00 profile image
Met00

I'd like to reassure you that you're highly unlikely to die from a broken hip in the next 15 years! The risk of death following hip fracture is only relevant to very elderly people and almost entirely those who are no longer able to live independently. Unfortunately the statistics are sometimes presented in such a way that it appears anyone who breaks a hip as a result of osteoporosis is at very high risk of ending up in a wheelchair or dying as a result. Most people who fracture their hips don't even end up in a wheelchair.

In addition, your hip score is only in the osteopenia range. If your DEXA report didn't include it, ask your doctor to do a fracture risk assessment, which will tell you your risk of fracture in the next 10 years. Your scores don't suggest a high fracture risk, particularly if they're sure you haven't had any fragility fractures (the latter would raise the risk of further fractures).

Emkap profile image
Emkap in reply to Met00

I’d like to second this. In my humble opinion I think the statistics about the dangers of hip fractures are very deceptive.

I broke my hip seven months ago after a trip and fall. It was operated on and I went home the next day. I’m now none the worse for wear, hiking, tap dancing and doing yoga. My hip is a little stiff but honestly my non broken hip is also a little stiff and the physicians assistant said that arthritis showed up on the X-rays.

My elderly mother in her 90s broke her hip two different times and recovered and came home both times ( not in a wheelchair). She had other significant health problems but I honestly don’t see how the broken hips made those problems worse or that they had anything to do with her death. Broken bones heal unlike other problems.

I’ll also second that it’s often a shock to find you have osteoporosis and hard to figure out what to do about it. I’m 72 and my Dexa numbers are sort of similar to yours, spine -1.3, femoral neck -2.8 and total hip -2.2. Despite my broken hip I was surprised. After a huge amount of thought Ive decided not to take meds for now. I’m trying to clean up my diet and be more attentive..

in reply to Met00

thank you for clearing this up a bit!

thank you Emkap and Met for your replies, I really appreciate it. So, I saw my primary and he referred me to a rheumatologist to start Prolia injections. I can't take oral bisphosphonates due to GI problems. Prolia sounds like an extreme first line of defense, and after reading about the side effects, I'm really reluctant to even consider it. Dr. also said Dexa scores don't really improve from medical or other treatments, just reduces your chance of fractures. This is so confusing...

Not sure where you are located, but if you are in the US, you can go to a website called Medimaps and enter your state to locate facilities with DEXA scan machines with TBS (trabecular bone scoring) software. TBS provides an indirect measurement of bone *quality” - which is as important as density/quantity. I am in my 50s and had osteopenia on my 1st 2 DEXA scans (w/o TBS). Then I had 5 fragility fractures. The DEXA scores after my fractures were lower but still only one area was -2.5. I found out about TBS and found a clinic with the software on their DEXA. The software is expensive, so not too many facilities have it on their machines. If you can find a center near you (or drivable distance), I highly recommend it. My TBS scores were in -4s to -5s (T-scores were -1s to -2.5) - so poor bone quality was my issue. I have since learned that most fragility fractures occur in people in the osteopenic range vs. osteoporotic range. Once you know where you stand in bone quantity AND quality, it will empower you to make the best decisions for you. I do not want anyone to go through what I have gone through (and still am dealing with).

Also, possibly get a second opinion from an endocrinologist or other doctor if you feel you are being pushed into one treatment without knowing all of the other treatment options. Best wishes to you.

in reply to

Thank you and I wish you well! I'll check out the locations in Florida.

in reply to

Thank you! I found the list I requested for a friend in FL a few months back:i

List of FL facilities w/TBS
Mark_ABH profile image
Mark_ABH in reply to

Thank you for sharing this, trabeculae. Here is a resource American Bone Health developed on this topic ... americanbonehealth.org/bone...

Something to consider about mortality rates and osteoporosis. It's been my experience that people don't die because of a broken hip or bone, but rather because they become bedridden and immobile due to the break. It takes very little time for pneumonia or some other respiratory issue to set in when you are not upright and moving. Simply due to age, our immune systems aren't as able to fight off subsequent complications and it takes much longer for our bones to heal. It's not a death sentence. My DEXA numbers are worse than yours. Hopefully, supplements and weight training will halt the progression. Wishing I could go back on HRT.

in reply to ItsColdinMinnesota

thanks, Minnesota! From what I've been reading, you're right. I've also been reading about HRT and it appears that the treatment isn't as risky as once thought. Did it work well for you when you were on it? The more I read about Prolia and other treatments, the more scared I become.

I'm no professional, but for women, I think estrogen is important for so much more than just bones (immune system, neurology, aging, etc.). No way I can get my Dr. to prescribe it anymore due to cancer and stroke risk at my age. At the same time, being just 20 lbs. overweight still poses a much greater risk than HRT does. I know it's absence over the last year has greatly accelerated my bone loss.

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