1. < Osteoporosis & Bone Health

Anyone taken Evenity (romosozumab) for Osteoporosis?

Posted by arlene7 @arlene7, May 27, 2020

Has anyone taken Evenity? I understand it’s only been on the market for a little over a year. I’m hoping it will help with my severe osteoporosis. Any information is helpful.

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ajcd777 | @ajcd777 | Nov 16, 2021
In reply to @sue225 "Forteo builds bone." + (show)
@sue225

Forteo builds bone.

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If you've had radiation you also can not take Forteo

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ajcd777 | @ajcd777 | Nov 16, 2021
In reply to @windyshores "I am curious why you cannot take Forteo or Tymlos after the radiation. Did you do..." + (show)
@windyshores

I am curious why you cannot take Forteo or Tymlos after the radiation.

Did you do chemo or only letrozole? In my case, letrozole worsened my osteoporosis and it could put you over the edge, but I don't think it would cause dramatically worse DEXA scan scores.

I don't understand why you were on Prolia after fractures. Prolia is an anti-resorptive not a bone-builder.

Prolia can actually interfere with progress on later Tymlos, Forteo or Evenity, or at least I have read that. I have 6-7 fractures and I am risking adverse reactions every day with Tymlos. Those of us with a number of fractures have no choice.

Tymlos really helps the spine. Not as much the hip.

If you really cannot have Tymlos or Forteo, the tiny risk of sulfa in Evenity is a reasonable risk. Can you take Benadryl and have an Epi-pen ready? (I don't see any sulfa in the list of inactive ingredients).

I react to polysorbates and that is in Evenity too yet I would not hesitate, given my fractures.

You are in a tough position but I don't think you have any choice: you need a bone builder!

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The reason why you cant take Tymlos or Forteo after radiation is that it causes bone cancer. I do not think they have found that to be the case with Evenity. But its such a new drug. Like others here, I have severe osteoporosis (-3.5) had some radiation after a lumpectomy and I also had a heart attack in 2010, so my options are limited. I am debating prolia or Evenity and talking to my cardiologist and other doctors about which one. No bone breaks yet, Im 63.

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windyshores | @windyshores | Nov 16, 2021
In reply to @ajcd777 "The reason why you cant take Tymlos or Forteo after radiation is that it causes bone..." + (show)
@ajcd777

The reason why you cant take Tymlos or Forteo after radiation is that it causes bone cancer. I do not think they have found that to be the case with Evenity. But its such a new drug. Like others here, I have severe osteoporosis (-3.5) had some radiation after a lumpectomy and I also had a heart attack in 2010, so my options are limited. I am debating prolia or Evenity and talking to my cardiologist and other doctors about which one. No bone breaks yet, Im 63.

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It has been found to be untrue that Forteo causes bone cancer in humans, and I believe not a single case has occurred since it began usage.

The black box warning for Forteo and bone cancer has been removed and the time limit taken off. Tymlos is newer and will probably also have the black box removed.

I also had breast cancer.

The amount of these meds given to rats was much much larger than what humans get.

That said, if you or I had bone metastases it could be a concern.

No doctor and no research that I have been able to find or request has said that breast cancer patients cannot take Forteo or Tymlos.

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ajcd777 | @ajcd777 | Nov 29, 2021

There was a recent study on Evenity that seems to say the risk for heart attack is not as great as they originally thought? Anyone taking it? What is the most current information?

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ajcd777 | @ajcd777 | Nov 29, 2021
In reply to @windyshores "It has been found to be untrue that Forteo causes bone cancer in humans, and I..." + (show)
@windyshores

It has been found to be untrue that Forteo causes bone cancer in humans, and I believe not a single case has occurred since it began usage.

The black box warning for Forteo and bone cancer has been removed and the time limit taken off. Tymlos is newer and will probably also have the black box removed.

I also had breast cancer.

The amount of these meds given to rats was much much larger than what humans get.

That said, if you or I had bone metastases it could be a concern.

No doctor and no research that I have been able to find or request has said that breast cancer patients cannot take Forteo or Tymlos.

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Thank you for this.

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heusty | @heusty | Nov 29, 2021

I too am interested in Evenity. I see many comments about it. Has anyone gotten their scores after complete it their treatment and are willing to share the results?

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marcd | @marcd | Dec 13, 2021

Back to Evenity: I have been taking it for 7 months with no side effects. I would be interested in information about follow up treatments after I am finished with Evenity in another five months. Is if possible to follow up Evenity treatment with Forteo? FDA has approved a new long term treatment protocol for Forteo -- so I would be interested if others have considered this or have experience with it.

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windyshores | @windyshores | Dec 14, 2021

I have read that Evenity can follow Forteo or Tymlos but not the other way around, but ask an MD. Evenity "turbocharges" growth so there may be less for the others to accomplish.

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1 reply
beverlyruth | @beverlyruth | Dec 14, 2021
In reply to @marcd "Back to Evenity: I have been taking it for 7 months with no side effects. I..." + (show)
@marcd

Back to Evenity: I have been taking it for 7 months with no side effects. I would be interested in information about follow up treatments after I am finished with Evenity in another five months. Is if possible to follow up Evenity treatment with Forteo? FDA has approved a new long term treatment protocol for Forteo -- so I would be interested if others have considered this or have experience with it.

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I just started taking my first shot of Evenity last week. I will take twelve shots in all, one shot per month, and then move on to Prolia for five years, when I’ll be taking one shot every six months. Too early to report anything more. So far I’m grateful to report no side effects of Evenity! Beverly Ruth

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marcd | @marcd | Dec 15, 2021
In reply to @windyshores "I have read that Evenity can follow Forteo or Tymlos but not the other way around,..." + (show)
@windyshores

I have read that Evenity can follow Forteo or Tymlos but not the other way around, but ask an MD. Evenity "turbocharges" growth so there may be less for the others to accomplish.

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Thank you Windyshores... your comment may be correct, in which case I wish I had known this 8 months ago. Nevertheless, maintaining the gains of Evenity by using Forteo still might have advantages. First, maybe the forteo would continue to build bone. Second, unlike the biphosphonates which tend to freeze everything, the forteo would not freeze everything. That might allow a better chance of re-building bone through exercise programs such as weight lifting. You're right, I need to talk with a doc. But meanwhile other's experiences help me understand the possibilities. Thanks again.

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