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

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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@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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@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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@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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@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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@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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@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.

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Your mom. My mom too. Why I requested testing originally

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@patwerthman

Your mom. My mom too. Why I requested testing originally

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@patwerthman Since I wrote the post in September, 2024, I have completed all 12 of the prescribed Evenity injections. I had a DEXA bone density scan in mid-November that showed significant gains in my hip (6% gain) and gains in my lower spine. I'm out of the osteoporosis range and back in the osteopenia range. I met with the endocrinologist who then recommended a Reclast infusion. I had the Reclast infusion in early December with no acute symptoms or side effects. The plan is to have another DEXA scan in November, 2025.

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@naturegirl5

@patwerthman Since I wrote the post in September, 2024, I have completed all 12 of the prescribed Evenity injections. I had a DEXA bone density scan in mid-November that showed significant gains in my hip (6% gain) and gains in my lower spine. I'm out of the osteoporosis range and back in the osteopenia range. I met with the endocrinologist who then recommended a Reclast infusion. I had the Reclast infusion in early December with no acute symptoms or side effects. The plan is to have another DEXA scan in November, 2025.

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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. 🫣🤔

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@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. 🫣🤔

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@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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