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.

awfultruth | @awfultruth | Oct 9 5:17pm
In reply to @gravity3 "Just finished 1 yr of Evenity and will start prolia next if I don't negotiate a..." + (show)
@gravity3

Just finished 1 yr of Evenity and will start prolia next if I don't negotiate a new plan with my endocrinologist. I am 76, just starting hrt again after many years without... estrogen, testosterone and progesterone.
I intend to talk with my endocrinologist about this possibility....one or two injections of prolia and then back to evenity or tymlos???? I have already had two years on forteo.

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@gravity3 I'm one of those who has serious concerns about Prolia. Also I am not at all sure that Prolia being substituted for Fosamax makes sense. The general problem with long term Fosamax (longer than 3-5 years) is that bone remodeling is suppressed too much for too long a time period. Bones can become fragile despite keeping their density. Is it proven that switching to Prolia a more powerful suppressor of bone remodeling solves the problem of overlong suppression? I believe I've heard some discussion of whether alternating anabolics with bisphosphonates might help deal with the problem of overlong suppression. The anabolics would cause remodeling to resume and potentially improve bone quality and architecture which would perhaps undo some of the harm of overlong suppression of bone turnover.

This is all theoretical, and wishful thinking on my part as that is the direction I'm going in. I will point out in my defense that much of what has happened over the past 30 years with osteoporosis medications at least in terms of a long term solution is not based on solid evidence. For example they gave folks Fosamax for years and years and years. They only knew it was ok for 2-3 years. Did no one think then that maybe suppressing bone turnover forever might cause some problems? Similar thing with Prolia did it occur to no one that very strongly suppressing might not cause some problems when you stopped the suppression?

Anyway I think it is reasonable to take Fosamax again for a short period, 1 year say, especially when you are alternating it with an anabolic med.

REPLY
gurine | @gurine | Oct 10 7:10am
In reply to @windyshores "@gravity3 Tymlos after Prolia might be risky in terms of rebound and various resources (McCormick, Leder)..." + (show)
@windyshores

@gravity3 Tymlos after Prolia might be risky in terms of rebound and various resources (McCormick, Leder) say it also isn't effective.

You or someone else shared a study on Evenity in that situation and it did seem to counter rebound and had was effective though effeciveness was reduced by prior Prolia.

Are you avoiding a bisphosphonate?

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Personally, I have serious concerns about Prolia. I am taking Alendronate after Evenity and it has worked well for me.

REPLY
06111945cc | @06111945cc | Oct 10 7:15am
In reply to @windyshores "To be honest, if your endo suggests Tymlos after Prolia I would get another endo! I..." + (show)
@windyshores

To be honest, if your endo suggests Tymlos after Prolia I would get another endo!

I forgot you did Evenity after Tymlos (like me). To get more time on treatment I wonder if you could do one injection of Prolia then Evenity then bisphosphonate (Not medical advice here, just wondering). It seems as if you will have to be on a bisphosphonate at some point but extending the time on treatment is what we all want if we have serious osteoporosis.

I was just watching a video on Osteoboston with Dr. Wein (?) and the risk for jaw necrosis and atypical femur fracture might still be low if you did another year. Check with pharmacist or doctor?

This is what really gets me. Noone knows how to keep us okay long term!

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You say:“extending the time on treatment is what we all want if we have serious osteoporosis”

Question: If you get to DEXA -1 to -1.5 you’ll have to stop and try something to keep gains.

What’s the course of action in that case?

cc

REPLY
kristie2 | @kristie2 | Oct 10 9:12am
In reply to @gravity3 "Just finished 1 yr of Evenity and will start prolia next if I don't negotiate a..." + (show)
@gravity3

Just finished 1 yr of Evenity and will start prolia next if I don't negotiate a new plan with my endocrinologist. I am 76, just starting hrt again after many years without... estrogen, testosterone and progesterone.
I intend to talk with my endocrinologist about this possibility....one or two injections of prolia and then back to evenity or tymlos???? I have already had two years on forteo.

Jump to this post

I had Evenity for 1 year and have moved on to Prolia to help build more bone density. I will do 2-3 injections and then Reclast. I started BHRT almost a year ago at 71 years. My endocrinologist was against it and all new studies were pointing in the right direction. Look for video’s on YouTube by Dr. Doug Lucas. Hope that this helps with your decision going forward.

REPLY
2 replies
kristie2 | @kristie2 | Oct 10 9:21am
In reply to @gravity3 "How long after Evenity is he having you start with Prolia?" + (show)
@gravity3

How long after Evenity is he having you start with Prolia?

Jump to this post

I skipped a month and then Prolia.

REPLY
gravity3 | @gravity3 | Oct 10 9:59am
In reply to @kristie2 "I had Evenity for 1 year and have moved on to Prolia to help build more..." + (show)
@kristie2

I had Evenity for 1 year and have moved on to Prolia to help build more bone density. I will do 2-3 injections and then Reclast. I started BHRT almost a year ago at 71 years. My endocrinologist was against it and all new studies were pointing in the right direction. Look for video’s on YouTube by Dr. Doug Lucas. Hope that this helps with your decision going forward.

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Thanks. I got no on bhrt from PCP, Endo and a gyno that I had consult with.
Some ideas die hard and our generation of women is paying the price

REPLY
gravity3 | @gravity3 | Oct 10 10:03am
In reply to @kristie2 "I had Evenity for 1 year and have moved on to Prolia to help build more..." + (show)
@kristie2

I had Evenity for 1 year and have moved on to Prolia to help build more bone density. I will do 2-3 injections and then Reclast. I started BHRT almost a year ago at 71 years. My endocrinologist was against it and all new studies were pointing in the right direction. Look for video’s on YouTube by Dr. Doug Lucas. Hope that this helps with your decision going forward.

Jump to this post

Then I went to a functional medicine provider and just started bhrt. I am
thinking of the same sequencing plan.

REPLY
ripley | @ripley | Oct 10 11:35am
In reply to @windyshores "@pami you had 7 years without meds, is that right? So I don't think any doctor..." + (show)
@windyshores

@pami you had 7 years without meds, is that right? So I don't think any doctor had told me that a long drug holiday like that is in the cards for me. My understanding is that over that time Reclast tends to dissipate, and the "locking in gains" applies to short term prevention of rebound from stopping other drugs. But I could be wrong: It does seem there is an expectation from doctors that Reclast will improve bone density over 3-5 years without risks, but if you didn't do any meds for 7 years it seems like natural post-menopausal bone loss would recur. Curious what others have to say!

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I have severe osteoporosis and one endocrinologist told me if I took 1-2 years of Reclast I wouldn't have to take anything else ever.

REPLY
awfultruth | @awfultruth | Oct 10 11:44am
In reply to @windyshores "@pami you had 7 years without meds, is that right? So I don't think any doctor..." + (show)
@windyshores

@pami you had 7 years without meds, is that right? So I don't think any doctor had told me that a long drug holiday like that is in the cards for me. My understanding is that over that time Reclast tends to dissipate, and the "locking in gains" applies to short term prevention of rebound from stopping other drugs. But I could be wrong: It does seem there is an expectation from doctors that Reclast will improve bone density over 3-5 years without risks, but if you didn't do any meds for 7 years it seems like natural post-menopausal bone loss would recur. Curious what others have to say!

Jump to this post

@windyshores That's how my thinking goes too. "locking in gains" is a bit of an exaggeration and as you say for a limited time. I'm only just beginning to look into that but it seems that after stopping bisphosphonates you may get a limited number of years of slow decline of bone density. That's your "drug holiday". And that slow decline may vary significantly with Risedronates having the fastest decline and Reclast the slowest.

I am just at the point of starting my second med as a follow up to Evenity and I hope to do another round of Evenity (though maybe a shorter round) after that. But eventually even if I continue to be successful in gaining bone density (and quality I hope) I have to face the same issues we are talking about here. How can we keep those gains and not suppress normal bone functioning too much and for too long? If we take Fosamax or Reclast for 3 years and stop - how long will we keep our bone density? Will we lose all we gained if we stop for 3 years or 5 years? Will we be scared into taking Prolia because it can (supposedly) be taken for more years without danger of overly brittle bone? It's a mess.
Are there studies that address these long term concerns? Any talks by top doctors?

REPLY
1 reply
bwaykm | @bwaykm | Oct 10 12:57pm
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 am also concerned about the heart attack and stroke risk. I hve cancelled my Evenity apointment 2 times. It keeps me up at night trying to decide what to do. I've tried all the other drugs and don't want to do Prolia. All my doctors say it's my decision.

REPLY
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