1. < Osteoporosis & Bone Health

What should I know before starting 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.

drsuefowler | @drsuefowler | Oct 22 1:04pm
In reply to @gravity3 "If you are on Medicare some of the costs may be covered. I don't know if..." + (show)
@gravity3

If you are on Medicare some of the costs may be covered. I don't know if it would be useful to you but I simply hate that my generation of baby boomer women were deprived of better research and information about menopause and HRT treatment. For myself I
Can't help but wonder how hrt may have improved the course of my aging and health: bones, skin,mood, libido...the list goes on. What I can do is point women of any age in the direction of better research and forums that seem to educate women anden about menopause.

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I totally agree. All my regular doctors still are against HRT, because of one flawed study. We could have been healthier and happier.

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1 reply
windyshores | @windyshores | Oct 22 2:26pm
In reply to @drsuefowler "I totally agree. All my regular doctors still are against HRT, because of one flawed study...." + (show)
@drsuefowler

I totally agree. All my regular doctors still are against HRT, because of one flawed study. We could have been healthier and happier.

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There is a 1 in 8 chance of having breast cancer and 80% of those breast cancers, I have read, are hormonal. The HRT study was skewed toward older women and we older women are well-represented in that 1 in 8. I would be cautious about HRT over a certain age. I know that study is controversial but as a cancer patient with a hormonal cancer, I also want to pass along some caution!

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awfultruth | @awfultruth | Oct 22 2:35pm
In reply to @daisy17 "What was your experience with Evenity as far as side effects and effectiveness? Thanks." + (show)
@daisy17

What was your experience with Evenity as far as side effects and effectiveness? Thanks.

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@daisy17 I had almost unbelievable gains in my spine (30%) and less than average gains in my hips (less than 3%). I had no side effects worth even mentioning. I went from a -3.7 to a -1.8 L2-L4 score. On my worst T-Score I went from -4.1 to -2.2.

I was jumping for joy but afraid to trust the results. I had a certified Densitometrist on Inspire look at my DXA's and he thought they were ok. I did find one small study where 1 individual got a 20% gain and one got a 30% gain. So it's not completely unheard of. I decided to trust it. And I'm having another DXA at the complete end of Evenity which is at the end of the month. The 30% DXA was at 10 months of Evenity.

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2 replies
maieva | @maieva | Oct 22 3:05pm
In reply to @awfultruth "@daisy17 I had almost unbelievable gains in my spine (30%) and less than average gains in..." + (show)
@awfultruth

@daisy17 I had almost unbelievable gains in my spine (30%) and less than average gains in my hips (less than 3%). I had no side effects worth even mentioning. I went from a -3.7 to a -1.8 L2-L4 score. On my worst T-Score I went from -4.1 to -2.2.

I was jumping for joy but afraid to trust the results. I had a certified Densitometrist on Inspire look at my DXA's and he thought they were ok. I did find one small study where 1 individual got a 20% gain and one got a 30% gain. So it's not completely unheard of. I decided to trust it. And I'm having another DXA at the complete end of Evenity which is at the end of the month. The 30% DXA was at 10 months of Evenity.

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Wow! I am so hoping for the same. I’m still not sure what to go on to keep those gains. I was on Reclast for the last two years and just started Evenity, but from the discussions I’m seeing, my gains might not be that much because of being on Reclast first??? I’m also not sure what to do after this year of Evenity is up. I definitely don’t want Prolia.

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daisy17 | @daisy17 | Oct 22 3:22pm
In reply to @awfultruth "@daisy17 I had almost unbelievable gains in my spine (30%) and less than average gains in..." + (show)
@awfultruth

@daisy17 I had almost unbelievable gains in my spine (30%) and less than average gains in my hips (less than 3%). I had no side effects worth even mentioning. I went from a -3.7 to a -1.8 L2-L4 score. On my worst T-Score I went from -4.1 to -2.2.

I was jumping for joy but afraid to trust the results. I had a certified Densitometrist on Inspire look at my DXA's and he thought they were ok. I did find one small study where 1 individual got a 20% gain and one got a 30% gain. So it's not completely unheard of. I decided to trust it. And I'm having another DXA at the complete end of Evenity which is at the end of the month. The 30% DXA was at 10 months of Evenity.

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That's great! Thanks

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gurine | @gurine | Oct 23 8:52am
In reply to @maieva "I am 66 years old and have been on Reclast for two years with some improvement..." + (show)
@maieva

I am 66 years old and have been on Reclast for two years with some improvement in my scores, although the second year my spine score went down. My endocrinologist at Mayo Clinic discussed Evenity and Tymlos and I think I am going to try Evenity since it is one year and convenient to go once a month to the clinic to get the injections. I had concerns about the black box warnings regarding heart attack and stroke, but she reassured me that she has not heard of anyone experiencing this. I also have an appointment with my cardiologist to see what he says before I start. I don’t know what else to do and yes, I’m very nervous about taking this drug, but I know it’s supposed to give me big gains in my spine where I need it the most. Any additional advice?

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I had a nearly 17% increase in bone density with the highest gain in my spine. I have read others say greatest gains are spine. I had no side-effects in my year of Evenity.

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