1. < Osteoporosis & Bone Health

Evenity

Posted by bevlevvancouverbc @bevlevvancouverbc, Sep 4 6:24pm

Sept 4th, 2024
EVENITY
Like many of you, I have started from shock, to fearfulness to being
apprehensive what medication to take for severe osteo.
My numbers are L -5.2 hips -3.6 and -4.0
I hoped to be able to improve the numbers with diet and exercise.
Eventually I realized that it might be possible with osteopenia
but probably not with severe osteoporosis. Dr Beck
Onero program is not available in Vancouver, yet.
I am trying to learn hip hinge and squats
eventually I will find a a physical therapist/kinesiologist
with osteoporosis experience.
I do the stairs as often as I can, increasing how many times:
until hopefully add ankle weights.
My threadmill speed is 2.2mph..the goal is to increase every few weeks:
method: increase, count 24 seconds - go back to starting baseline – several times:
the goal is 2.5mph which is maintenance: and the larger goal is 3.1mph
which is osteogenic.
Diet: aside from the calcium and and Vit D: am looking into natural
sources of Vit K (Natto is not something I could consume regularly).
and have 5-6 prunes daily.
So…have finally made the decision to go with Evenity, if approved.
Have not used anything in the past: anabolic or anti resorptive.
Thank you for ladies from Canada for mentioning CTX. It is available
in Vancouver (sorry I didn’t mark down names) P1NP and TBS is not available.
Neither is REMS. I got a CTX – which we pay out of pocket here, so is
Vit D out of pocket unless it’s requested by a specialist. And TBS is
not available either. My CTX was in the 500.
Would be glad to hear comments, or shared stories.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

bevlevvancouverbc | @bevlevvancouverbc | Sep 5 10:58am
In reply to @naturegirl5 "@bevlevvancouverbc @windyshores Thank you both for this discussion. While all three of us have been diagnosed..." + (show)
@naturegirl5

@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.

Jump to this post

@naturegirl5
good to hear from you:
am interested to know what your scores were
before you started Evenity. And what made you
decide on Evenity.
Of course, hypertension is a disease/disorder: thanks
for clarifying it.

REPLY
bevlevvancouverbc | @bevlevvancouverbc | Sep 5 11:18am
In reply to @naturegirl5 "@windyshores I figure the cause for my diagnosis of osteoporosis is more genetics than anything else...." + (show)
@naturegirl5

@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.

Jump to this post

agreed, Windy, that -3.3 score is not great, and I wonder why Dr McCormick
is satisfied with his score, and does not continue with another anabolic.
Or perhaps in the future he will. Especially if his numbers get worse.
thank you, all, @windyshores, @naturegirl5, @rola, @drsuefowler,
for sustaining this, and other conversations.
Someone in another post mentioned OsteoStrong. I would never exclude
anything out, and am always glad to learn more.
Dr Lucas has several videos on it (with Dr Jaquish) This program may
not be for everyone. But have a listen to what he has to say.
Have come across Dr Greger (he is an M.D specializing in nutrition) explaining
more about onions. It has quercetin. Buckwheat also has quercetin.
I’m intrigued by Celiac, non Celiac Gluten sensitivity
and gluten intolerance. I’ve had the Celiac test and tested
negative. Is that as far as I should look into it.
My reason to ask: why is my CTX showing active bone loss.
Dr McCormick has said, in one of his interviews, to
find the source of bone loss if possible, before going on meds.
I seem to have had all the necessary tests: including the 24
hour urine, and tests to exclude MM. I have IBS, however it is
not considered to be malabsorptive.
Marydone Low Intensity Vibration: it is very
expensive, but hope makes decisions for you sometimes.
I had two finger digits pressed to order one, when I saw Dr Belinda
Beck’s study had come up, with discouraging, or not as
positive outcome. Some will still buy it, if the outcome is
even a slight improvement in bone density.
Margaret Martin has a video “How Debi reversed Osteoporosis”
combination of exercise, nutrition, and low intensity vibration to reverse her
osteoporosis. Reverse sounds wonderful. Especially osteoporosis, and not
Osteopenia. I should watch the video again to see what her scores were.
But to me, the interview didn’t expand in details, her exercizes and so on.
Margaret also has an interview with
Dr Janet Rubin, endocrinologist, who mentions that she has the vibration
plate in her office, and uses it often – for various health
reasons. I believe Dr Janet Rubin is related to the owner/originator
of Marodyne, Dr Clinton Rubin. If so, is this a confict of interest?
Margaret Martin is above board in all things, and I think
is a straight shooter. Her move to Portugal is great, I’ve see
the video where she is running up stairs near or around their
home. It is really sad that her husband Richard got
prostate cancer. She has a new video about Cancer and
exercize. She has done many videos and a great service to many
at no charge.
The American astronauts who are delayed at the International
Space Station: I don’t know if they have the ARED to work out
with: however, somewhere I read that returning astronauts,
depending on length of time in space, can have a bone loss up to 50%
Windy has wise words: genetics... or not.
The root cause is past tense.
This is where we are now and what do we do about it.
I think I’m reaching..all/most of you…still learning..how to..

REPLY
1 reply
bevlevvancouverbc | @bevlevvancouverbc | Sep 5 11:24am

Hello NatureGirl:
just read your profile: that you had cancer
and a hip replacement...
you've had a lot to deal with,
and hope you are doing much better.

REPLY
1 reply
windyshores | @windyshores | Sep 5 5:38pm
In reply to @bevlevvancouverbc "agreed, Windy, that -3.3 score is not great, and I wonder why Dr McCormick is satisfied..." + (show)
@bevlevvancouverbc

agreed, Windy, that -3.3 score is not great, and I wonder why Dr McCormick
is satisfied with his score, and does not continue with another anabolic.
Or perhaps in the future he will. Especially if his numbers get worse.
thank you, all, @windyshores, @naturegirl5, @rola, @drsuefowler,
for sustaining this, and other conversations.
Someone in another post mentioned OsteoStrong. I would never exclude
anything out, and am always glad to learn more.
Dr Lucas has several videos on it (with Dr Jaquish) This program may
not be for everyone. But have a listen to what he has to say.
Have come across Dr Greger (he is an M.D specializing in nutrition) explaining
more about onions. It has quercetin. Buckwheat also has quercetin.
I’m intrigued by Celiac, non Celiac Gluten sensitivity
and gluten intolerance. I’ve had the Celiac test and tested
negative. Is that as far as I should look into it.
My reason to ask: why is my CTX showing active bone loss.
Dr McCormick has said, in one of his interviews, to
find the source of bone loss if possible, before going on meds.
I seem to have had all the necessary tests: including the 24
hour urine, and tests to exclude MM. I have IBS, however it is
not considered to be malabsorptive.
Marydone Low Intensity Vibration: it is very
expensive, but hope makes decisions for you sometimes.
I had two finger digits pressed to order one, when I saw Dr Belinda
Beck’s study had come up, with discouraging, or not as
positive outcome. Some will still buy it, if the outcome is
even a slight improvement in bone density.
Margaret Martin has a video “How Debi reversed Osteoporosis”
combination of exercise, nutrition, and low intensity vibration to reverse her
osteoporosis. Reverse sounds wonderful. Especially osteoporosis, and not
Osteopenia. I should watch the video again to see what her scores were.
But to me, the interview didn’t expand in details, her exercizes and so on.
Margaret also has an interview with
Dr Janet Rubin, endocrinologist, who mentions that she has the vibration
plate in her office, and uses it often – for various health
reasons. I believe Dr Janet Rubin is related to the owner/originator
of Marodyne, Dr Clinton Rubin. If so, is this a confict of interest?
Margaret Martin is above board in all things, and I think
is a straight shooter. Her move to Portugal is great, I’ve see
the video where she is running up stairs near or around their
home. It is really sad that her husband Richard got
prostate cancer. She has a new video about Cancer and
exercize. She has done many videos and a great service to many
at no charge.
The American astronauts who are delayed at the International
Space Station: I don’t know if they have the ARED to work out
with: however, somewhere I read that returning astronauts,
depending on length of time in space, can have a bone loss up to 50%
Windy has wise words: genetics... or not.
The root cause is past tense.
This is where we are now and what do we do about it.
I think I’m reaching..all/most of you…still learning..how to..

Jump to this post

@bevlevvancouverbc
"The root cause is past tense."

I told you, you have a way with words! Well said!

I guess like everything in life we have to figure out what to accept and what to work on.

REPLY
1 reply
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Sep 5 5:44pm
In reply to @bevlevvancouverbc "Hello NatureGirl: just read your profile: that you had cancer and a hip replacement... you've had..." + (show)
@bevlevvancouverbc

Hello NatureGirl:
just read your profile: that you had cancer
and a hip replacement...
you've had a lot to deal with,
and hope you are doing much better.

Jump to this post

@bevlevvancouverbc Thank you. The original diagnosis of endometrial cancer was in 2019. I was already scheduled for a hip replacement so I did that a few months after the radical hysterectomy. That was five years ago and sometimes it feels like not all that long ago. My body certainly feels re-organized but I'm doing well.

REPLY
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Sep 5 6:01pm

@@bevlevvancouverbc @windyshores I'm suspicious about anything for osteoporosis (or other diagnoses) that has not been thoroughly vetted through unbiased research including clinical trials. I place Marodyne vibration plate in that classification. I also place some supplements in that classification. On the recommendation of my integrative medicine physician at Mayo I subscribe to ConsumerLab.com (not to be confused with Consumer Reports). Consumer Lab combs the research, does their own testing, and provides conclusions on whether the supplement contains what the label indicates and evaluates for cost. They also test food sources. It's the skeptic in me but I figure that some of these products that are recommended without substantial evidence are tjust rying to separate me from my money. Well, don't all products do that but if I'm going to spend my money I want the product to be effective. I listen to my doctors who also listen to me and we arrive at a decision that will work for me.

REPLY
1 reply
bevlevvancouverbc | @bevlevvancouverbc | Sep 5 6:51pm

@windyshores
@naturegirl5
Yes , I concur that many products are pushed by unethical
persons who lighten your wallet.
I have seen Tod Cooperman in interview with Margaret Martin,
and I believe he is precise and gives good advice.
His video may still be accessible on the web.
I mentioned Marodyne in a previous post.
I had asked one of the specialists I met, if he could locate
the test results of the Vibmor trial. At which his nose
reached the ceiling as if a bad odour had entered the room.
(Eventually I was able to find the Dr Beck study.)
His reply was if it works, we would know about it.
Any question I put to him was equally offputting.
His head bobbed and shook in time to his explanation that
whole body vibration - is like paint shakers.
Did I need to engage with him that ..no: low intensity vibration
is not like whole body vibration.
But there is a good ending here as in a good book.
The rheumatologist that I saw last week knew about this study.
yes she said the Vibmor Study.
So, I am with the right doctor.
I am keeping my fingers and toes crossed that it remains
that way.

REPLY
bevlevvancouverbc | @bevlevvancouverbc | Sep 5 6:56pm

@naturegirl5
....your body feels re-organized...
interesting way of putting it...
kudos to you.

REPLY
bevlevvancouverbc | @bevlevvancouverbc | Sep 5 7:11pm
In reply to @windyshores "@bevlevvancouverbc "The root cause is past tense." I told you, you have a way with words!..." + (show)
@windyshores

@bevlevvancouverbc
"The root cause is past tense."

I told you, you have a way with words! Well said!

I guess like everything in life we have to figure out what to accept and what to work on.

Jump to this post

@windyshores
wind below my wings..thank you

it's only been a week since I saw the rheumatologist
and at least I have time to say to myself: okay
you have made a decision.
I don't expect to be turned down, but things happen.
Whatever. If turned down:
Other decisions/choices will be made.
I notice that now, I am less obsessed with Dr Google.
And have more time to reunite with my
pile of books/reading which has been neglected.
And listen more to classical music.
And try to tickle the ivories...piano - which sounds
more like arm wrestling sometimes. Beginning to
play as a senior can be .....wait...maybe the piano
just needs tuning.

I like this little whatever you call it..
levity....break up the fascia of worry ...of osteo and
whatever else is going on in your life..

If you don't read the news/media - you are un-informed.
If you do read the news/media - you are mis-informed.

I don't know who wrote this but I don't think it's Benjamin Franklin

REPLY
1 reply
rola | @rola | Sep 5 10:47pm
In reply to @bevlevvancouverbc "https://www.youtube.com/watch?v=Isxum0ibnJg This link is a conversation — Dr Kara Fitzgerald and Dr Keith McCormick. Hope it..." + (show)
@bevlevvancouverbc

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

Jump to this post

Hi there, thank you for the video you posted. No matter how many times I listen to Dr McCormick, I always enjoy his presentation. This video combined with Dr Fitzgerald who is new to me was very nicely done. Dr Mc. always has a positive outlook, relieving much fear of OP meds.

Maybe Dr Mc has stabilized, the meds did their job, his bone quality is good, he's not fractured in ages, and it's under control. That's a win😉. Hoping, we all might get there too!!!

REPLY
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