Looking for guidance: I am 72, very... - American Bone Hea...

American Bone Health: Osteoporosis

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Looking for guidance

rnb054 profile image
16 Replies

I am 72, very active and in good health (so far). Only prescription med I take is Livalo 2mg (for cholesterol). I also take high dose vitamin D every other week plus calcium and magnesium.

My latest dexa scan was in January of this year. T-score for AP spine -3.7, femoral neck (left) -2.7, total hip (left) -2.2, femoral neck (right) -2.5, total hip (right) -2.3, total hip mean -2.3.

Have consulted with two endocrinologists and 1 rheumatologist. All tell me that I need meds ASAP.

One endo recommended prolia, the other one wants me on either forteo or tymlos or evenity. I have not researched any of these meds, but evenity has a box warning that it can increase risk of death from cardiovascular problems. I don't need any help in that department, my family history is more than enough (both parents died of heart decease).

I am really confused as to what to do. This is making me feel imprisoned in my own body. The 2nd endo told me quite emphatically that there is no other way to better my situation except thru those dangerous meds.

If any of you can share a success story after taking the meds, I would love to hear it and I'm sure so would others.

16 Replies
Met00 profile image
Met00

First, please don't accept Prolia or Evenity before first making sure you're able to take a bisphosphonate. Apart from the risk you've highlighted with Evenity, both require you to go straight onto another osteoporosis medication when you stop taking it, and this is usually a bisphosphonate (eg Fosomax, Actonel - Alendronic Acid and Risedronate respectively in the UK). Prolia carries a risk of multiple rebound spinal fractures if you stop taking it, so a relay medication is essential to reduce the risk of this happening. If you're told you can be on it for life, nobody can guarantee that this will be possible.

Second, that's a big difference between your scores, suggesting that there could be an error with your spine score, in which case you may only just be on the cusp of osteoporosis, or indeed not even have it. If you're fit, healthy and never fractured, you may well not need medication. I would certainly question this with them! But of course I'm not in a position to assure you that you won't fracture, so this would have to be your decision. If you're able to access a REMS bone scan, that has been shown to be more reliable than DEXA and also gives a score for bone strength. If REMS hasn't come to your part of the world (it's available in limited places in the US), you could try to get a second DEXA scan done on a machine that also has software installed to provide a trabecular bone score, as that also gives a better indication of bone strength.

Finally, there are other ways to ensure healthy bones. High impact exercise (eg jogging, hopping, jumping, skipping, dancing) and progressive weight training have been shown in studies to reduce fracture risk and in some cases even improve bone density. Also, bone density alone isn't a reliable predictor of fracture risk, which is why it's quite common for people with osteopenia to fracture while others with very poor t-scores never fracture. Falling is actually one of the greatest risks for fracture, so can be minimised by balance exercises and taking sensible precautions like avoiding or taking extreme care in ice, mud and wet leaves as well as loose mats in the home.

Bones change very slowly, so it's fine to take your time to do your research, ask questions and refuse to be rushed into a decision. Good luck!

dcdream profile image
dcdream in reply to Met00

I have had osteoporosis for 10 years and am 68. My scores are very similar to yours. I do not take drugs, lead a very active daily life and have never fallen nor fractured. I felt very similar to you this summer when my doctors pushed for me to begin meds. However, being that these meds have long term side effects and require dosing for the remainder of my life, I am waiting until I fracture to reconsider the meds. All of us have to decide for ourselves what to do. I do follow a very healthy diet, work out daily with either pilates, yoga and do weight training 3 days per week, I hike or walk daily. I also had 2 months of physical therapy this summer to learn proper body mechanics and work on balance strategies to avoid falling, which is the main cause of fracture and concern from doctors. Take time to research and decide what to do, so when you make a decision, you are comfortable with it. Good luck.

rnb054 profile image
rnb054 in reply to Met00

Many thanks ladies for your encouraging replies.

I am a pretty hardy soul (up until now), been through a lot in my life (haven't we all) and intend to take this seriously but not stop me from doing the things I want to do. However, I can't deny I'm scared of falling.

My balance is pretty good now and I take nice long walks with my puppy and do weight training (got the bone builders you-tube tip from one of the ladies here....thank you!).

I appreciate the tip about the PT for body mechanics. Thank you dcdream!!!

I have a question for Met00. Why do you think "that's a big difference between your scores, suggesting that there could be an error with your spine score". I have no clue.

Again, much appreciated, all your input.

Met00 profile image
Met00 in reply to rnb054

Some experts believe that there shouldn't normally be more than 1 standard deviation difference between t-scores (eg -2.6 and -3.7 would be 1.1 standard deviations). Sometimes a score may appear better than it really is, due to arthritis, and in rare case (for example being bed-ridden or a wheelchair user) the spine score may be significantly worse than the hip), but for most of us, because osteoporosis is systemic (affects the whole spine in a similar way), scores should be similar.

Texanna profile image
Texanna in reply to Met00

This is interesting & news to me. Thanks for sharing. Looking at my t-scores (-3.3 spine & hip -1.6 & -1.0), I see a pretty big difference.

Met00 profile image
Met00 in reply to Texanna

Yes, that's a significant difference! Everyone I know who has had more than 1 standard deviation between scores from a DEXA scan has had scores that are broadly similar to each other from a REMS scan!

Bubby45 profile image
Bubby45

Unfortunately I cannot add much. I started on Prolia and had only a couple injections before Corona, and then had to go off because of the need for dental work. I was off for a couple years and only now just started again. I've had multiple fractures, so must be on some treatment for osteoporosis and this is the medication covered by my insurance. The only possibly helpful comment I can add is that I have not experienced any side effects. It's too early to judge whether the medication is effective.

Kulbir108 profile image
Kulbir108

There are alternatives …. We are a mess based society in the US Check into Australia Osteoporosis organizations and alternative medicines ….. excercise and vibrational plates. I purchased a life pro which is doing more for my “whole” body and mind ….. balance and mindfulness is important ….. strengthen your muscles around your bones … There are alternatives to meds do the resea ch

Kulbir108 profile image
Kulbir108 in reply to Kulbir108

med based not mess but then that is the perfect Freudian slip

Texanna profile image
Texanna in reply to Kulbir108

I’m checking out Life Pro on Amazon and see there are different models. Is there one that you recommend?

Kulbir108 profile image
Kulbir108 in reply to Texanna

I purchas d the $200 one and it works great ….. there are many articles in this he effectiveness !! Margret Martin and MelioGuide has so much info including YouTube’s on excersize/yoga for bones !!! I purchased her book….. also look into Buff Bones forgot the woman’s name but she has a daily 10 minute program …. My next purchase will be a weight vest !!!

MeMaw1 profile image
MeMaw1 in reply to Texanna

I bought Life Pro Turbo 3 D low intensity vibration plate. Cost $249.00 comes with full body workout . A lifetime of online videos to watch for workouts, 4 resistance bands and the handled workout band with a book of exercises. It’s low intensity with different settings of programs. It’s on Amazon. I found the prices kept changing on the Life pro brands , so don’t wait to long or the price changes. Mine had a $40 off coupon .

Texanna profile image
Texanna in reply to MeMaw1

Thanks, MeMaw1 - 👍

Texanna profile image
Texanna

I’ll check all this out - thanks!

rnb054 profile image
rnb054

thank you so much!

I just placed my order for the Life Pro. Will report on progress.

FearFracture profile image
FearFracture

In 2019, at age 50, I was diagnosed w/ osteoporosis, lumbar t-score was -3.9 and both hips were in the -3.1 range. I'm 53 now. I was younger than you and my BMD was/is lower than yours. When I asked for natural ways to improve BMD both my primary care physician and my endocrinologist had little to no advice. Note, I have not lost any height and I don't have any fragility fractures.

I'd been seeing my endocrinologist since 2017, that's the year I was diagnosed with Hashimoto's hypothyroidism. When my endocrinologist told me my bones were "horrible" and that I needed the osteo-meds, I trusted him. I took alendronate for 1.5 yrs and it caused disgestive tract issues so I quit taking it, took a 4 month bisphosphonate holiday, and at my doctor's advice had my first zoledronic acid infusion in November 2021. After the infusion, I started doing my own research and wish I had done the research instead of just listening to my endocrinologist.

Some ppl are able to reverse their osteoporosis naturally. You should check out

theboneclinic.com.au/

Belinda Beck of The Bone Clinic ran the LIFTMOR studies. Women in their 70 and 80, with supervision, are able to lift heavier weights and naturally increase BMD.

You might also want to look at OsteoStrong.me. If there were and OsteoStrong within 2 hours of my home, I would sign up for their program (unfortunately the closest one to my house is a 4.5 hour drive).

Also check out Cindi's Story on Dr. Brown's website, BetterBones.com, the link is betterbones.com/exercise/bu... Cindi was in her mid-60s and was able to reverse her bone loss.

My point is, if you aren't fracturing, there is no rush to take meds, you probably aren't going to crumble. Give yourself a minute to do some research. One common theme you will find on this website is that doctors tend to immediately pull out the prescription pad when it comes to "treating" low bone density. My mother's 75 y.o. cousin is a retired nurse and she has osteoporosis and has chosen not to take osteoporosis meds--she is focusing on diet and exercise but she is not lifting heavy weights.

The single best thing you can do is start incorporating simple balancing exercising into your daily routine. Falling is what causes most fractures so having good balance is 50+% of the battle.

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