Evenity Advice?

Posted by maieva @maieva, Sep 26 11:14am

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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@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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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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@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.

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

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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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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

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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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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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@gravity3

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

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I skipped a month and then Prolia.

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