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.

@rgibson123

Which med did you go on after finishing the course of Evenity?

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Alendronate

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@awfultruth

@gravity3 sorry for your complicated situation. I don't know your history other than what you just stated. Current and prior DXA's, any fractures, your age, reactions to previous osteo meds if any, and a timeline of what you did when and the result. Any comments I would make would just be suggestions of possibilities. Of course others would likely chip in.
What you are facing is what all of us taking osteo meds are facing or will be facing. That is none of these meds leads to a solution where you don't have to keep doing something else. You cannot safely take the bisphosphonates forever, some seem to think you can take Prolia forever but if you ever have to stop woe is you and the anabolics are for short term gain and something else has to be done to keep what you gained.
One question, what did you mean by an Evenity holiday?

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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

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 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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@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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I was on alendronate for five years prior to evenity. A bisphosphonate would be my choice but my endocrinologist is against it. Ugh! I feel helpless.

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@gravity3

I was on alendronate for five years prior to evenity. A bisphosphonate would be my choice but my endocrinologist is against it. Ugh! I feel helpless.

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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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@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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Let me see if I understand...

Tymlos/Forteo build bone density. But, you can only take them for a limited time. If you still need/want to build more bone density after that, then you need to continue with another drug, like Prolia or Evenity. There's a big rebound risk with Prolia, so idealy you don't want to be on it too long, and preferably you can avoid it altogether?

Then, you need something like Reclast or Fosamax to lock in gains that would otherwise be lost?

Is there a point where you can stop taking meds, depending on what DEXA result the doctor deems acceptable to live with?

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@gravity3

My endocrinologist wants me to start on prolia after my endocrinologist of Evenity holiday. I don't want to do this and suggested alendronate. He is against this because I was in alendronate for 5 years prior to evenity. I am wondering about risendronate instead. What about one course of prolia then back on Evenity. Ugh!!!! I absolutely hate this so stressful. Any ideas are most welcome. I took forteo prior to alendronate

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I was faced with the same situation as you. I was on Evenity for a year and now Prolia for 2-3 injections and then onto Reclast. The Prolia can increase your bone density further and then reclast to lock in the gains.

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@kristie2

I was faced with the same situation as you. I was on Evenity for a year and now Prolia for 2-3 injections and then onto Reclast. The Prolia can increase your bone density further and then reclast to lock in the gains.

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

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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 am not sure about the "lock-in" gains using Reclast. I had 3 years of Reclast and then stopped it when my bones had improved. Ten years down the road, my spine was horrible! -4.5! I had 2 more years of Reclast and now I am on Evenity. I am not eager to use Reclast again. I blame it for a loss of my kidney function. Osteoporosis is currently not curable. It is manageable by always using different drug treatments.

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@pami

I am not sure about the "lock-in" gains using Reclast. I had 3 years of Reclast and then stopped it when my bones had improved. Ten years down the road, my spine was horrible! -4.5! I had 2 more years of Reclast and now I am on Evenity. I am not eager to use Reclast again. I blame it for a loss of my kidney function. Osteoporosis is currently not curable. It is manageable by always using different drug treatments.

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@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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