Only 53 with severe osteoporosis and about to fearfully take Evenity

Posted by songbird18 @songbird18, Feb 24 11:24am

I am 53 and just got an awful bone density result. (Spine T score 4.1, hip 3.5). The rheumatologist is going to put me on Evenity for a year but I am so afraid after reading about the dangers of heart attack and stroke. The doctor also told me you can’t get any dental work done, but you never know when you are going to have a tooth emergency. I don’t feel I have a choice but to take it because my bones are so bad and my back is in constant pain. I’m wondering if anyone has been using Evenity and how it has affected them. Thank you!

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@aria817

My T score is close to yours. Do you have a back fracture? I have pain as well and need a back x- ray. This is all new to me abd I am scared. Just started Fosamax from my primary care. No idea what kind of doctor to go to.

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I'd suggest an endocrinologist, or maybe look for medical centers that have osteoporosis specialists. Primary care doctors don't know much about this. Mine just said "take Fosamax and we'll check again in two years", which Dr. McCormick scoffed at, saying "yeah, that's not a good plan."

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@aria817

My T score is close to yours. Do you have a back fracture? I have pain as well and need a back x- ray. This is all new to me abd I am scared. Just started Fosamax from my primary care. No idea what kind of doctor to go to.

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@aria817 if your T scores are serious or you have any fractures, I truly hope you can find an endocrinologist. I also hope you can talk to your doctor about stopping Fosamax, because it can lower the effectiveness of the bone builders Forteo, Tymlos and Evenity. Fosamax increases bone density by reducing bone turnover but does not actively build new bone. And by all means get an x-ray. PCP's seem to offer Fosamax mostly because insurance has made it front line. That needs to change.

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@aria817

My T score is close to yours. Do you have a back fracture? I have pain as well and need a back x- ray. This is all new to me abd I am scared. Just started Fosamax from my primary care. No idea what kind of doctor to go to.

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Endocrinologist.
I was started on alendronate years ago but if I am correct the current thinking is start with a bone builder. There is so much wisdom here on Connect.

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I'm 65 with rather severe oseoporosis in spine especially; hips not quite so severe. I'm on Evenity now. Have had 8 doses with no problems. Am anxious to find out the results in a few months.
The NP had me see my dentist for approval to start Evenity. I see my dentist regularly anyway, so we were just looking to see if there were any potential problems in the near future. Nothing of concern was found so I went ahead and started Evenity.

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@mariewms

I'm 65 with rather severe oseoporosis in spine especially; hips not quite so severe. I'm on Evenity now. Have had 8 doses with no problems. Am anxious to find out the results in a few months.
The NP had me see my dentist for approval to start Evenity. I see my dentist regularly anyway, so we were just looking to see if there were any potential problems in the near future. Nothing of concern was found so I went ahead and started Evenity.

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I didn't know there may be dental issues with Evenity. My Endo would like me to go on Evenity and knows I have a tooth that will need replacement anytime and didn't mention anything. I know that is the case for Reclast, which she said I need my dental issue to resolve before I go on that next. I have declined any meds so far and my T-score stayed the same for the last 17 months with diet, exercise and supplements.

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@loplady

I didn't know there may be dental issues with Evenity. My Endo would like me to go on Evenity and knows I have a tooth that will need replacement anytime and didn't mention anything. I know that is the case for Reclast, which she said I need my dental issue to resolve before I go on that next. I have declined any meds so far and my T-score stayed the same for the last 17 months with diet, exercise and supplements.

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@loplady Evenity is anti-resorptive in approximately the last half but I have been told it is a weak anti-resorptive that does not lower CTX (resorption rate) as far as bisphosphonates or Prolia. It works by inhibiting sclerostin so not sure how that affects dental issues and since it came out in 2019, research may still be ongoing!

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In this article, the Dr said, "after stopping anabolic agents or denosumab (Prolia), the decreases in bone density are very large".

Does this mean that after stopping Forteo, Tymlos or Evenity, you will lose significant bone density if not followed up with Fosamax or similar drug?

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@aria817

My T score is close to yours. Do you have a back fracture? I have pain as well and need a back x- ray. This is all new to me abd I am scared. Just started Fosamax from my primary care. No idea what kind of doctor to go to.

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Find an endocrinologist who specializes in osteoporosis.

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@ripley

In this article, the Dr said, "after stopping anabolic agents or denosumab (Prolia), the decreases in bone density are very large".

Does this mean that after stopping Forteo, Tymlos or Evenity, you will lose significant bone density if not followed up with Fosamax or similar drug?

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@ripley The aftermath of stopping Forteo, Tymlos, Evenity is one thing. The aftermath of stopping Prolia can be quite another.
Yes you will lose much of the bone you gained by taking an anabolic if you do not do something to stop that from happening. Like taking a bisphosphonate. But note that the bone losses after stopping Forteo, Tymlos or Evenity without a follow up are not associated with sudden increased fracture risk.
With Prolia there is a danger of sudden increased fracture risk. Everyone will lose whatever bone they gained with Prolia but some people have multiple spinal fractures after stopping it. I've heard of everything from 2 to 10 fractures. The risk is worse the longer you take it.

I am of the opinion that the bone loss that can happen with the bone builder meds should not be discussed in the same breath as Prolia which is a very powerful antiresorptive. In fact I changed my opening sentence in this comment into two separate sentences just so I wasn't mixing Prolia in with the anabolics.

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