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.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

This was just one case so people will be fair in noting the limited data. But I note others on these threads and other sites mentioning serious adverse effects yet to appear in Amgen's updated reports. (Maybe unrelated, maybe not but the trend for how side effects are first vehemently denied by the pharmaceutical industry before admitted to is a pattern it created. So let it take responsibility for our resulting skepticism about rosy claims and negatives printed in tiny, tiny font or spoken at hyperspace in commercials.)

"Romosozumab was not effective in preventing multiple spontaneous clinical vertebral fractures after denosumab discontinuation: A case report*

https://www.sciencedirect.com/science/article/pii/S2352187220300486
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@hopeful33250

Hello @reb1946 and welcome to Mayo Clinic Connect. I can understand you want to hear from others who have taken Evenity. On Mayo Connect there is a discussion from members using Evenity. Here is the link to that discussion, https://connect.mayoclinic.org/discussion/evenity-osteoporosis/.

This will introduce you to those who have used (or considered) using this med to treat bone loss. If you want to ask a question of anyone in the group, just click on reply and you can ask questions or get more information.

I see that you have taken Prolia. Did you stop taking that because of the stroke in your occipital lobe or is the Prolia just not working well for your bone loss?

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I had the stroke before I started Prolia. I have not stopped it but I have had 2 spinal fractures since I started Prolia and my Dr is recommending Evenity.

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@callalloo

This was just one case so people will be fair in noting the limited data. But I note others on these threads and other sites mentioning serious adverse effects yet to appear in Amgen's updated reports. (Maybe unrelated, maybe not but the trend for how side effects are first vehemently denied by the pharmaceutical industry before admitted to is a pattern it created. So let it take responsibility for our resulting skepticism about rosy claims and negatives printed in tiny, tiny font or spoken at hyperspace in commercials.)

"Romosozumab was not effective in preventing multiple spontaneous clinical vertebral fractures after denosumab discontinuation: A case report*

https://www.sciencedirect.com/science/article/pii/S2352187220300486

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Thanks for this post. I read the report and will remember it.

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@reb1946

I had the stroke before I started Prolia. I have not stopped it but I have had 2 spinal fractures since I started Prolia and my Dr is recommending Evenity.

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That one study that I noted above shows that, in that case, Evenity did NOT prevent the fractures and bone loss caused by taking, then going off of, Prolia . Therefore you might want to ask your doctor about a different 'relay drug' to protect from Prolia discontinuation. There are other choices that people on the Mayo Connect topics have written about. Some of them might pop in here with suggestions to at least ask about.

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One more point about researching drugs on FAERS or elsewhere. Be sure to check both by brand name and generic name when applicable. More people are taking anastrozole (generic) than Arimidex (brand). Side effects of one should should, conceptually, apply to the other unless manufacturing standards differ greatly (which can happen, ask your pharmacists their standards for generics and stay with the top-tiered whenever possible).

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@callalloo

That one study that I noted above shows that, in that case, Evenity did NOT prevent the fractures and bone loss caused by taking, then going off of, Prolia . Therefore you might want to ask your doctor about a different 'relay drug' to protect from Prolia discontinuation. There are other choices that people on the Mayo Connect topics have written about. Some of them might pop in here with suggestions to at least ask about.

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Thank you.

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In reply to @reb1946 "Thank you." + (show)
@reb1946

Thank you.

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It's only one study of one patient but a possible hazard cone. I know too much about the pharmaceutical industry to not be triply-diligent about the approval process, studies done in poor countries without strictest reporting standards and bribery,-assisted results, etc. I think the John LeCarre book and movie captured it very well. "The Constant Gardener"

I take prescription drugs, but am just extremely careful. To me, it looks like Amgen hopes to corner the aging female market by getting people on a train they can't easily unboard (Prolia) with the only safe exit onto Evenity. Great business model unless, well, the preferred safe exit drug doesn't work. I have an aversion to Trojan horse drugs...

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@reb1946

I had the stroke before I started Prolia. I have not stopped it but I have had 2 spinal fractures since I started Prolia and my Dr is recommending Evenity.

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Are you currently experiencing a lot of pain, @reb1946?

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@nancyguy

I saw an endocrinologist who discussed Evenity with me. Possible side effects include stroke and heart attack. Originally, the FDA refused to approve this med. Finally, in April 2019, it was approved. I refused to take it although that doctor told me it was the only med I could take to strengthen bones (because I had radiation for cancer in the past). I am on Fosamax, which does not strengthen bones, but is supposed to prevent further thinning (which I doubt because of recent x-rays which showed a thinning of pelvic bone between June 2019 and Feb. 2020. So, you see, with severe osteoporosis, I am "between a rock and a hard place." Good luck to you with whatever you choose. God bless!
Nancy

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My endocrinologist has been giving me Evenity injections to treat osteoporosis. I received 8 injections (two shots, once a month). I have experienced a lot of side effects:
loss of concentration, couldn't use my logic or problem solving, memory loss, extreme fatigue, hair loss, weak vision, tingling in hands, needle tingles in feet, bone pain (of course, I kind of expected that), sores on my scalp, leg, buttocks, nails dry and splitting). I am a cancer patient since 2012, received 1 year of chemo after ovarian surgery. I still have cancer it is in remission. The chemo caused hair loss as well as memory loss. I could not remember people's names or correctly use math, or remember numbers. After taking the Evenity for 8 months, I decided to stop. It was just like being on the chemo again. I have now been off Evenity for two and half months and am feeling much better. hair loss has slowed down, and the sores are clearing up. My logic skills are coming back, and memory is better but i don't feel sharp. I have a appointment with a "new" endocrinologist tomorrow... we'll see what happens next. I too feel like I am between a rock and a hard place. I could not do the full 12 months of Evenity. My bones have become very thin -4 even though I eat healthy foods and take the calcium and D3 .... nothing is working. also, i was supposed to do more excersize and weight lifting, but just like the chemo, the evenity made me so weak and fatigued all I wanted to do was go lay down and sleep. since i have been off of it , i definitly have more energy. i will let you know how it goes.

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@arlene7

I've had 8 doses (once a month) and so far so good! I will get my new scans in May after one year on Evenity. Hoping that the scan show considerate improvements!

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what side effects are you experianceing? any hair loss? memory loss?

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