1. < Osteoporosis & Bone Health

What should I know before starting Evenity?

Posted by bevlevvancouverbc @bevlevvancouverbc, Sep 4, 2024

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.

gravity3 | @gravity3 | 2 days ago
In reply to @patwerthman "Great. I read many commenters about reactions to Evenity. But I’ve only been on alendondrate with..." + (show)
@patwerthman

Great. I read many commenters about reactions to Evenity. But I’ve only been on alendondrate with no real movement in 3 years. -3.7. 3.5. And this November 3.7 Doctor says all is fine. 🫣🤔

Jump to this post

Why alendronate first. The current thinking seems to be to start with a bone builder like tymlos, forteo or evenity but I am not a doctor and I don't know what your health history is. Do you know your doctor's rational for a bisphosphonate first? I would encourage you to do your own research. Is she/he an endocrinologist? Do you know about your doctor's training in menopause and especially in osteoporosis. Anyway their is a wealth of knowledge and support here.

REPLY
1 reply
broken13 | @broken13 | 2 days ago
In reply to @gently "@patwerthman, where is the -3.7 ? Alendronate does offer long term fracture protection, but -3.7 doesn't..." + (show)
@gently

@patwerthman, where is the -3.7 ? Alendronate does offer long term fracture protection, but -3.7 doesn't seem fine.
Forteo or Tymlos are worth consideration most especially if the low numbers are in the spine.
I'm starting a third year of Forteo.
The needles are so tiny (3/16') that you laugh when you see how easy it is to inject yourself everyday.

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Re: starting your 3rd year of Forteo. I am also starting a 3rd year of Forteo. First used it in 2016 after 13 spinal fractures. Followed up with Evista for 5 years. Now in 3rd month of another course of Forteo. My spine cannot be read, but my hip is -3.5. Can I ask you a bit of your journey in when you did your first course of Forteo, maintenance drugs and bone density score? Seems no one is following results or implications of using Forteo again past the 24 months. Perhaps we should start a thread on that.
Thank you for your post. Very encouraging : )

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bevlevvancouverbc | @bevlevvancouverbc | 2 days ago

@broken13
thanks for your comments about Forteo:
am very interested in members' experiences
in taking Forteo beyond 24 months.

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gently | @gently | 2 days ago

There are at least four of us then. I'm happy to yield my numbers. I thought about posting on my bio page, but I've left my favorite links there and have more than 500 digits in my bone markers alone. It would be nice to have what ever anyone wants to reveal in the same place.

Happy Epiphanies to everyone!

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bevlevvancouverbc | @bevlevvancouverbc | 2 days ago

here is a recent video from Dr Doug Lucas
some may find it helpful
His MasterClass is expensive and makes it
difficult to join.
I notice that a@gently
had a comment on it on June 2, 2024

REPLY
patwerthman | @patwerthman | 2 days ago
In reply to @gravity3 "Why alendronate first. The current thinking seems to be to start with a bone builder like..." + (show)
@gravity3

Why alendronate first. The current thinking seems to be to start with a bone builder like tymlos, forteo or evenity but I am not a doctor and I don't know what your health history is. Do you know your doctor's rational for a bisphosphonate first? I would encourage you to do your own research. Is she/he an endocrinologist? Do you know about your doctor's training in menopause and especially in osteoporosis. Anyway their is a wealth of knowledge and support here.

Jump to this post

I’m getting an outside opinion My dr is good but is a general interest and I don’t feel she’s helping and as knowledgeable about osteoporosis

REPLY
patwerthman | @patwerthman | 2 days ago
In reply to @gently "@patwerthman, where is the -3.7 ? Alendronate does offer long term fracture protection, but -3.7 doesn't..." + (show)
@gently

@patwerthman, where is the -3.7 ? Alendronate does offer long term fracture protection, but -3.7 doesn't seem fine.
Forteo or Tymlos are worth consideration most especially if the low numbers are in the spine.
I'm starting a third year of Forteo.
The needles are so tiny (3/16') that you laugh when you see how easy it is to inject yourself everyday.

Jump to this post

Interesting! Yes. I’m appalled at those scores. 2024 states T-score of -3.7 at the hip.

2024 says bone density at femoral neck corresponds to a T-score of -3.5

REPLY
gravity3 | @gravity3 | 20 hours ago
In reply to @patwerthman "Great. I read many commenters about reactions to Evenity. But I’ve only been on alendondrate with..." + (show)
@patwerthman

Great. I read many commenters about reactions to Evenity. But I’ve only been on alendondrate with no real movement in 3 years. -3.7. 3.5. And this November 3.7 Doctor says all is fine. 🫣🤔

Jump to this post

As I understand it the current thinking on osteoporosis treatment now is to start with a bone builder like tymlos, forteo or evenity
Is your doc an endocrinologist or rheumatologist? What is their training and expertise with osteoporosis?

REPLY
2 replies
patwerthman | @patwerthman | 18 hours ago
In reply to @gravity3 "As I understand it the current thinking on osteoporosis treatment now is to start with a..." + (show)
@gravity3

As I understand it the current thinking on osteoporosis treatment now is to start with a bone builder like tymlos, forteo or evenity
Is your doc an endocrinologist or rheumatologist? What is their training and expertise with osteoporosis?

Jump to this post

Met with my primary and an endocrinologist. Alendronate was the suggested drug. No others offered. Endocrinology was just this July. But offered nothing else. Trying to get them to release my tests so I can get another opinion. Road blocks and hassled for getting them to fax my records. Not happy

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