Struggling with making an osteoporosis treatment decision

Posted by heyhey @heyhey, Dec 15, 2020

I am just struggling to make a decision about my treatment. I had my first bone density test and found I have osteoporosis. I have a couple of -3.2 vertebrae. My hip bones less problematic. I'm 60, active and fit. I've seen an endocrinologist and a rheumatologist who were both highly recommended. Both said "Evenity" before I barely sat down. But there is so little known about Evenity, and nothing known about its long term effectiveness or risk. I've read heart breaking posts from women who were advised to take Prolia with the same assurance and then had multiple debilitating fractures because so little was known/admitted about rebound risk. I am tearful and anxious and sleepless. I've been so healthy my body has carried me through so much life and adventure. I just don't know what to do , whether I'm putting me/my body at risk. Both doctors are paid consultants for Amgen. I feel hopeless and distressed. One of the doctors, although I said I wanted to consider my options, went ahead and got pre authorization for Evenity from my insurance "to show me how easy it would be". I feel cornered. My general doctor also has concerns about me being put on a relatively unknown drug when I haven't tried something like Forteo with a long track record.

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@readhead1226

Thank you so much. Im hoping for better scores as well. Mine are similar to yours. Ill post as well next month when I have my new DEXA. What will you use now after Evenity?

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That's the rub...when I started last June I was told "this is the only bone density med you'll ever have to take again." Since Evenity was new, I guess that was the thinking. Now I've been told that in a year I will have to have an infusion of ?; I hear infusion and I think chemo. That may be incorrect, but I hear that there's some chemo in several bone medicines, and I just don't want that. ..so much for listening to doctors. We seem to have agreed that weekly Actonal is what I'll be taking, since I had it for years before without any issues.

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@ceciliamarypatriciafrancis

When I had my first bone density in 2000, my spine was -3.6 and my hips -3.5 Over the past 23 years with fosomaxx and actonel, my hip scores improved some, down to -3.0. My spine never improved, but didn't get worse. My new density test this month showed a major improvement in my spine -2.7 and my hips -2.6. That's still osteoporosis, but so much better. From what I've been reading, improvement seems to be really good in the spine. Yale is my local hospital, so the doctors available to my family have been great and I don't question their treatments. As I noted, my only possible side effect was a minor rash that I think was due to my mild allergy to sulfa.

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Your last bone density results showed considerable improvement. Were you still taking fosomax and Antonella?

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@ceciliamarypatriciafrancis

That's the rub...when I started last June I was told "this is the only bone density med you'll ever have to take again." Since Evenity was new, I guess that was the thinking. Now I've been told that in a year I will have to have an infusion of ?; I hear infusion and I think chemo. That may be incorrect, but I hear that there's some chemo in several bone medicines, and I just don't want that. ..so much for listening to doctors. We seem to have agreed that weekly Actonal is what I'll be taking, since I had it for years before without any issues.

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The infusion would be either Reclast or Prolia. Reclast is a bisphosphonate, just like Fosamax and Actonel. So you would probably do well with that. But it's great that you can handle oral Actonel- some of us can't!

I am curious what you mean about "chemo in several bone medications." Lots of drugs are infused and don't resemble chemo other than method of administration.

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@bruceandruth1970

Your last bone density results showed considerable improvement. Were you still taking fosomax and Antonella?

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It changed Actonal to Antonella!

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@windyshores

The infusion would be either Reclast or Prolia. Reclast is a bisphosphonate, just like Fosamax and Actonel. So you would probably do well with that. But it's great that you can handle oral Actonel- some of us can't!

I am curious what you mean about "chemo in several bone medications." Lots of drugs are infused and don't resemble chemo other than method of administration.

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When I had my one and only injection of Prolia in 2014 within days I had a rare side effect...my sense of taste was totally off. I could taste things but, it was distorted. Coffee was especially foul. I belatedly looked Prolia up and read all sorts of complaints by users, including the fact that it contained chemo. I went to my pharmacist who did the injection and asked but he basically hemmed and hawed. I just made up my mind I was never going to take it again. More recently, a poster on this website mentioned that possibility also.
I'm also probably biased. My husband , who had prostate cancer going into his bones, was treated with a denosumab infusion by his oncologist and died a few weeks later when he took a slight fall and broke his femur in 3 places. This may be why I'm associating denosumab with chemo.
So, do I know there is chemo in denosumab? No, but maybe a professional who monitors this website should give a definitive answer.

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@ceciliamarypatriciafrancis

When I had my one and only injection of Prolia in 2014 within days I had a rare side effect...my sense of taste was totally off. I could taste things but, it was distorted. Coffee was especially foul. I belatedly looked Prolia up and read all sorts of complaints by users, including the fact that it contained chemo. I went to my pharmacist who did the injection and asked but he basically hemmed and hawed. I just made up my mind I was never going to take it again. More recently, a poster on this website mentioned that possibility also.
I'm also probably biased. My husband , who had prostate cancer going into his bones, was treated with a denosumab infusion by his oncologist and died a few weeks later when he took a slight fall and broke his femur in 3 places. This may be why I'm associating denosumab with chemo.
So, do I know there is chemo in denosumab? No, but maybe a professional who monitors this website should give a definitive answer.

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So Xgeva is the same drug as Prolia (denosumab) and both are given to patients with metastasis of cancer to the bones.
Read the section here on "how Prolia works."
https://chemocare.com/chemotherapy/drug-info/Prolia.aspx
These meds are not chemo in the sense that they don't kill the cancer (though there has been some question about whether it can prevent spread to the bones, at some point). Instead they treat the effects of cancer on the bones and help prevent fractures from those effects.

For osteoporosis, denosumab would not be used with chemo drugs, of course, and would inhibit the resporption that causes bone loss in osteoporosis.

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I did read this and other similar reports. I wish I could remember the posting on this site fairly recently that mentioned chemo in some bone medicines. I have checked off and on in the last few months since I realized that there was some controversy and uneasiness about all the meds. I'm really amazed at how many people hate Prolia because of side effects. I just know Evenity worked like gangbusers for me.

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@ceciliamarypatriciafrancis

I did read this and other similar reports. I wish I could remember the posting on this site fairly recently that mentioned chemo in some bone medicines. I have checked off and on in the last few months since I realized that there was some controversy and uneasiness about all the meds. I'm really amazed at how many people hate Prolia because of side effects. I just know Evenity worked like gangbusers for me.

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Maybe someone said that they felt as if they were on chemo-?

There are no bone drugs that have "chemo" in them. as I understand "chemo" to mean.

Biphosphonates and denosumab are used WITH chemo when cancer has spread to bones, to prevent fractures.

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@windyshores

Maybe someone said that they felt as if they were on chemo-?

There are no bone drugs that have "chemo" in them. as I understand "chemo" to mean.

Biphosphonates and denosumab are used WITH chemo when cancer has spread to bones, to prevent fractures.

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That probably is what's causing the confusion. I realize that even though my doctors are excellent, you really have to research anything you take. When I had my strange taste problem right after taking Prolia, I refused to take any more. Now after reading so much about it, I really got off lucky. I can't believe it's still on the market.
I just picked up my weekly prescription for Actonel. I see that has caused many problems also. When I took it some years ago, it was the monthly dose and I handled it just fine, although it didn't help my bones very much. I'll be more vigilant this time now that I know the side effects and the levels of severity.
If I had my life to live over (I'm 83) I would have run, hiked and lifted weights more to avoid all this. Still, with my undiagnosed celiac causing little nutrition getting into me for my first 61 years, I guess even that wouldn't have helped much.

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@ceciliamarypatriciafrancis

That probably is what's causing the confusion. I realize that even though my doctors are excellent, you really have to research anything you take. When I had my strange taste problem right after taking Prolia, I refused to take any more. Now after reading so much about it, I really got off lucky. I can't believe it's still on the market.
I just picked up my weekly prescription for Actonel. I see that has caused many problems also. When I took it some years ago, it was the monthly dose and I handled it just fine, although it didn't help my bones very much. I'll be more vigilant this time now that I know the side effects and the levels of severity.
If I had my life to live over (I'm 83) I would have run, hiked and lifted weights more to avoid all this. Still, with my undiagnosed celiac causing little nutrition getting into me for my first 61 years, I guess even that wouldn't have helped much.

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Wow that is a long time to have undiagnosed celiac! My daughter has it so I know a little about it. Good luck with the Actonel.

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