Evenity

I got three lumbar fractures in one moment of unwise movement with a DEXA score of -3.7. At -5.2 I would think you are at serious risk. If it were me, I would take it easy until it is safer- stairs, ankle weights, treadmill are not going to bail you out right now, but medications will help a lot (in my experience).

Have you considered Tymlos and then Evenity to extend the time you are on an anabolic? Many doctors seem to be prescribing Evenity these days for severe osteoporosis because it works fast, so perhaps that is the best course, but you could discuss it with your doctor. Tymlos works well for spine and I went from -3.7 to -2.5 in less than 18 months. For you that "excellent gain" of 20% would still leave you in the -4's. Like many of us you will probably be on at least one or two other drugs.

I am not trying to be negative but only give you my experience so you can hopefully avoid it.

I understand the benefits of exercise and diet but please be careful. My fractures are not only painful but disabling in a lot of ways. And I have yet to find a safe physical therapist. My PT does massage only and I am grateful for her caution.

Hello windy.. I have been lucky, I have no back pain. A recent spinal X-ray
showed something, but it doesn’t indicate when it happened - as I recall
it’s considered moderate. This may have occurred back when, unknowingly I
was moving heavy planters in backyard.
Yes I considered Forteo, which is now off patent, in Canada I think called
Osnuvo or teva- teriparatide.
I don’t think Tymlos is as easily available here. I have read about how
you used Tymlos and found that interesting.
Right now, with my T scores, and never taken any other medication, the cost
for Evenity would be very minimal, or subsidized.
When I compared benefits between Forteo and Evenity, there did not appear
to be a great difference. Results vary from individual to individual.
Forteo would take two years, with daily injections. Because it has been
around longer than Evenity, more is known about it and considered ‘safe’…
as you know..all medications have risks, side effects, from ONJ, atypical
thigh fracture, and maybe maybe not osteosarcoma..
My rheumatologist told me the cost for Forteo would be around $10,000 a
year. She wasn’t sure about cost for Forteo generic.
She was the third specialist suggesting Evenity.
It is stomach churning realization that I will have to continue to be on
medication for many years.
I have this resistant gene for medication:
I was told to take statins for cholesterol several years ago. I didn’t.
My latest cholesterol test showed it was curving down .My doc asked: what
are you doing? No nothing. In fact I gained 10 lbs the last few months,
eating more , more cheese, to help heal a broken wrist from fall
(surgery).
That’s how my osteoporosis was discovered. Called a fragility fracture.
My point: if I had been on statins, my doc would have said .. good, statin
is working.
About doing stairs, or threadmill. I think it’s good, however you can, to
do some cardio, as we get older the risk for cardiovascular risk increases.
I don’t know if resistance bands works cardio. It does muscles, muscles
pulling on bones.
With Evenity, there is going to be blood work, at the 6 months mark, to
check cholesterol (LDL) and A1C..
It makes sense,to be careful about exercises, I don’t think heel drops, and
certainly no stomping. For now.
If Dr Belinda Beck had one of her Bone Clinics Onero programs here, I would
join. One of her participants had severe T scores.
Nice to connect.. when I sent off my first…
hello anybody there.. I thought it went into the ether.. thanks Windy for
giving my post a home.
Maybe next post: anyone knows/ update about osteoboost belt?
I have.. need to find if you want.. links to LIV study.
Any thoughts about why there is this global osteoporosis problem?
and NASA is working on meds, for astronauts in addition to ARED.

I forgot to mention, I sometimes wear a hip protector.. I have two of them.
One is the one Margaret Martin recommended, looks like exercise shorts,
and the other from Amazon worn over clothes

HI again @bevlevvancouverbc. You have a way with words!

I would speculate that the "global osteoporosis problem" is because we are living longer.

I walk every day and do tai chi (but no bending or twisting).

The fact that osteoporosis doesn't cause pain makes it even more dangerous!

Interesting that you have one fracture with no symptoms. And moderate at that. All of mine have been painful and disabling- in the short term and to some extent the long term.

When I chose Tymlos first it was because I was told I could to Tymlos to Evenity but not the other way around. Not sure what the current thinking on that is.

Yes I am getting a hip protector! Good practical non-medication protection. My kids joke that I have no bum so maybe the padding will help with that too 🙂

To Windy:
..".a way with words"...warms the cockles of my heart..

about 'global osteoporosis problem'
Living longer is presented as a reason....

Another reason given is 'genetics'
that's what one of the specialist said to me..
he did not say:
but we know that families...eat the same foods .....
or dislike certain
foods.....our diet is influenced by what we eat when young.
that is cultural, not genetics.
If I don't eat Natto, I might eat saurkraut, and yogurt,
I might not eat rice, but potatoes and bread.
the breast cancer gene(s) Brca has been identified and mapped.
I don't think osteoporosis has been found on human genome,
and I don't know of any research at this time.
So I don't think it was accurate for him to state that it is genetic.

but further about the reason for osteoporosis
I wonder about ....trace nutrients..not in our foods...
because of modern agricultural methods..
do you remember when fields were left 'fallow'
Not anymore..
I don't know enough about modern agricultural practices
to say what is or isn't being done.
it is interesting that countries such as.... India, for example,
have high osteoporosis rates, what are their farming practices,
(people get enough Vit D through sun.)
but other countries (can't recall name.. at this time)
where dairy is not highly consumed, do not have high rates
of osteoporosis.

English sailors were called Limeys...because it was discovered
if they ate lemons or limes on long voyages they would not get scurvy.
Linus Pauling's thinking on Vitamin C (orthomolecular) is controversial,
although there is an RDA, and dietitians think Vitamin C is necessary (as our bodies do not make it)

It is not cost/reward effective for phamaceutical companies to see what nutrients,
trace mineral, and others we are lacking and need. It would not
offer much to them in terms of profit. Drugs is more profitable,
you can patent it.

about having no pain in spine: this is where I am
wondering about bone quality vs bone density.
Not corticol bone, but trabicular which is in the spine.
(thinking of the discussions about different types of strontium in diet)

what will be recommended after Evenity is an unknown
I suspect the specialists are also unsure.
the sequences seem to be changing.
It probably will be another anabolic, because, Windy, as you
astutely said, even after Evenity, my spine T score is still going to be
abysmal.

Question:
why do we call Osteoporosis a disease?
we don't call high blood pressure a disease..
high blood pressure is a symptom, that can be monitored
or altered: sometimes with or without meds.
the history of Osteoporosis is interesting:
and... how Dexa machines were given to medical clinics..

more later?

https://www.youtube.com/watch?v=Isxum0ibnJg This link is a conversation — Dr Kara Fitzgerald and Dr Keith McCormick. Hope it works. I found very encouraging the information Dr McCormick gave. He has a T score of -3,3 after medication (elsewhere I think he specified Forteo followed with Reclast - not sure how many times,) and has not followed up treatment for several years. With that score of -3,3 he says he has not fractured, and continues to have an active life, with focus on his health enhancing nutrition and supplements. If you want transcript in addition to video, you can access on right side, then find this particular video, as she has several. He also has other information, which are in his book. Bevlev

@bevlevvancouverbc @windyshores Thank you both for this discussion. While all three of us have been diagnosed with osteoporosis your back-and-forth posts have brought many variables and points to consider.

A little about me. My mother had osteoporosis so I was at risk. You can change your own life style but you can't change your genetics, right? However, my mother had more life style risk factors than I did and there were fewer options in the mid-1980's when she was diagnosed. She fractured a shoulder and later her hip both from falls and became very frail during the last years of her life. And she was in a lot of pain. She died at age 75 and I'm currently 72 years old. I miss her every day and tell myself I do not wish to live with the frailty that she did. I know this is what she wants for me.

I've been active for much of my life and began weightlifting more out of interest and fun than health reasons when I was in my mid-30's. I hiked, cross-country skied, walked, climbed up and down stairs in my home and at my workplace when my office was on the third floor (no elevator as it was a converted Victorian home on a university campus). With all that I was diagnosed with osteopenia in my mid-40s. As my t-scores moved to the osteoporosis range I agreed to 5 years of Fosomax. I didn't have any fractures until 2022/2023 when a CT scan administered for cancer surveillance showed a sacral fracture that was likely due to the effects of pelvic radiation therapy I'd had the year before.

So here I am. My endocrinologist told me I've been doing everything possible to manage the osteoporosis however the fracture changed the equation and he recommended medication. I've had 10/12 injections of Evenity for "bone building". The plan is to then move to a bisphosphonate such as Reclast to maintain bone density. I see the endocrinologist in November and following a bone density scan we shall see what he recommends.

I continue to be active with walking, hiking, and weightlifting. I take a calcium citrate supplement on days when I haven't ingested enough calcium through food sources - again the recommendation of my endocrinologist. I take Vitamin D3 every morning as I know one cannot get this through food sources.

Yes, we are living longer, aren't we? And with this longevity comes physical health problems that we are experiencing.

I think high blood pressure is a symptom. And the disease/disorder is called hypertension.

Perhaps like @naturegirl5 my osteoporosis became severe from cancer treatment so I don't speculate a whole lot about cause.

McCormick did Forteo then Fosamax. I have assumed that his course of disease might be different as a male who has not gone through menopause. I don't know much about that.

A score of -3.3 is concerning, as he has said himself.

@windyshores I figure the cause for my diagnosis of osteoporosis is more genetics than anything else. That's about as far as I go with speculation too. No sense in spending much mental energy on cause.