Spine Doctor and hip doctors opinion .. scared to start taking them

Posted by Diana @albertklein, Sep 6 6:22pm

Had a Dexa -3.5 on spine and left hip. went to a hip doctor, opinion this medicines are poison, when to s pain Dr. same opinion. went to an endocrinologist she sent me to do some blood work to see the reason, I do not smoke, drink and not overweight.
Super scared to take this medicines... but on the other hand I live alone and need my mobility, do not know what to do. waiting for the blood work and will have a second opinion form a different endocrinologist any suggestions. ?

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Profile picture for bevlevvancouverbc @bevlevvancouverbc

@girlgma9

Another thing we don't mention enough is the toll
on our emotional well being.

Lately I have been wondering why do so many
people, mainly women it seems, get osteoporosis.
First glance, it appears to be global:
but have not done enough data search to see
if there are pockets of places that do not have
it to the extent of western societies -
exclude studies on societies that have
diets of natto, or people who squat
in agricultural work or sitting squats instead
of chairs like we do.
Has lifestyle changed so much, the answer
is of course yes.
Many things have changed in our lifestyle.
But, I am at this place,
what if it was a nutrient, whether vitamin
or mineral, or .. that our diet does not supply anymore,
or does not supply enough.
If it is genetics, as one endocrinologist said to me -
then please show me the studies -
because mother and sister had it only tells me
that you had common lifestyles.

Scurvy and rickets.
Sailors got scurvy which was helped with lemon/
lime..that is why they were referred to as Limeys.

Nothing is that simple of course. Osteoporosis might not be that simple -
... our body functions are dependent on many
hormones/ digestive system, and so on, that as laypeople
we certainly don't fully understand.
Menopause, lack of hormones has a role.
Aging has a role,
As we age, perhaps our system gets less efficient
at absorbing what is needed for health and bones.

the osteoporosis enigma is like the 3 blind men with
an elephant:
one says the elephant looks like a huge trunk:
the other says the elephant is huge ears:
and the the third says something else

the parable on the web is
One man touches the elephant's side, thinking it's a wall;
another feels the trunk and calls it a snake;
a third finds the leg and compares it to a tree
The parable illustrates that individual, subjective experiences can be
true in isolation but fail to capture the entire objective reality.

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I so agree! Maybe with all of us putting our collective heads together we can find some answers. Until then let’s continue to support each other and share what we have learned.

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Most of us lose bone as we lose estrogen. Estrogen counters the production of the cells that break down bone. What I can understand is why we aren't advised to have dexas at menopause or at 50 whichever happens first. We know about hot flashes and weight gain; why don't we know about osteoporosis. Genetics? Sure it's the double X.

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Profile picture for daisy17 @daisy17

The main goal with osteoporosis meds is to reduce fractures. You can do a search on a particular drug by investigating the "absolute risk" of fracture reduction.

I agree with your viewpoints here though. I certainly wish we had better drug options -- ones that reduce fractures without serious side effects.

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Yes, reduce fractures. Some of the drugs are better at that then others, but the % of reduction is small when you read the studies. The truth is the drugs make your bones more brittle in the the long term. Also, it is designed to keep you on the drugs for life because the studies are only done up to 2-3 years. That is why they take you off and put you on different ones. More people fracture with osteopenia than osteoporosis because there is more of THEM. I say we have freedom in this country to make our own decisions but we must be an advocate for our own healthcare and do our own research.

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Hello @dvargo,

As we often see in the discussions on Mayo Clinic Connect, treatments are as individual as the person taking them. It's never a one-size fits all situation. That is why it is important to be informed and talk with your provider to find out what is right for you.

One big factor for patients to consider when diagnosed with osteoporosis is the risk vs. reward of risking bone fractures without medication and the potential side-effects of osteoporosis medications. It is important to work through this with your provider because the severity of the individual diagnosis is different for everyone and therefor can change the timeframe of a treatment decision. While we all have control over our medical decisions it is important to keep the guidelines in mind when using Mayo Clinic Connect: https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/.

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Profile picture for dvargo @dvargo

Yes, reduce fractures. Some of the drugs are better at that then others, but the % of reduction is small when you read the studies. The truth is the drugs make your bones more brittle in the the long term. Also, it is designed to keep you on the drugs for life because the studies are only done up to 2-3 years. That is why they take you off and put you on different ones. More people fracture with osteopenia than osteoporosis because there is more of THEM. I say we have freedom in this country to make our own decisions but we must be an advocate for our own healthcare and do our own research.

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There are two osteoporosis drugs that don't make your bones more brittle. Tymlos and Forteo.

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Profile picture for gently @gently

There are two osteoporosis drugs that don't make your bones more brittle. Tymlos and Forteo.

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How do we know that? I'm not aware of any studies that determine bone quality after taking these meds. Also, after taking either of these drugs, you have to follow up with a drug like Fosamax to maintain your gains and I Fosamax maintains old bone, which can be brittle.

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Daisy17, hi. One way of knowing is by the way the medications work. Most of the medications block cell that dissolve defective bone. Bisphosphonates attach to the bone preventing these osteoclastic cells from attaching causing the death. Prolia stops these cells from developing fully and Evenity blocks a protein necessary for their production. The pth 1-34 medications increase the production of both types of cells the osteoclasts that dissolve older and damaged bone and the osteoblasts the cells that produce new bone.
Then there are the warnings on all the other meds about osteonecrosis and atypical fractures. In a sense all of the clinical trials signal issues about bone quality except Forteo and Tymlos.
There are actual studies about bone quality. https://www.healio.com/news/endocrinology/20220726/2-years-of-teriparatide-restores-bone-quality-to-premenopausal-levels#:~:text=Teriparatide%20r estores%20bone%20mineral%20quality,that%20of%20healthy%20premenopausal%20women.%E2%80%9D
There are other less accessible studies, animal studies and pathological studies. https://journals.plos.org/plosone/articleid=10.1371/journal.pone.0229820
Not to obscure your point about how ephemeral these bones are. It may become more common to stay on Forteo or Tymlos now that the restrictions have been removed.

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Profile picture for gently @gently

Most of us lose bone as we lose estrogen. Estrogen counters the production of the cells that break down bone. What I can understand is why we aren't advised to have dexas at menopause or at 50 whichever happens first. We know about hot flashes and weight gain; why don't we know about osteoporosis. Genetics? Sure it's the double X.

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Hope my story is helpful.
I got my first DEXA at menopause. My choice not my doctor’s. Osteoporosis in spine snd Osteopenia in hip. And found out I’d had a vertebral fracture from a fall in my 40’s. I chose to carry on until the time I couldn’t exercise any more and check in at 70 yrs old. My choice agsin. My spine scores had got worse as I had Dexas every 5 years. But they started at -3.8 and last one just had was -4.5. Hip is still pretty good scores but are getting worse.
So now I fell and/or lifted or combination and had 2 fractures in spine. Had my last DEXA. Now I am looking into getting on some meds. Not looking forward to it. Need a specialist hopefully who listens and cares. I did find it takes much research snd getting feedback from this group and it really is a hard choice! Also I don’t want to lose anymore height as that was a symptom I’d never kept on top of.
Anyway we are all different and make choices as best we can. Have to be as positive as possible right?
Best wishes to us all.

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Brenda, wishing you luck on finding a good specialist; there are a lot of them out there. We make the best decisions as we see them and shouldn't look back either pridefully or regretfully. They are hard choices and we don't have guarantees. I hope you hang out here and tell us how it goes for you. Bless your choices.

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Profile picture for Diana @albertklein

He left it for me to decide and suggested I ask an endocrinologist if he would permit a year of diligent walking and supplements and have another dexa.
I am consulting a second endocrinologist to see his opinion..
Thank you!, I will keep you posted.

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Just posted this on another page Walking not enough YOu have to find someone who does the Onero program (basis for LIftmor study in Australia) tho they are not all over yet. This article explains why the program works though, maybe trainer can duplicate it for you /
https://howardluksmd.substack.com/p/osteoporosis-prevention-and-treatment

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