Prolia vs. Evenity

Posted by bayhorse @bayhorse, Jun 26 5:40pm

I am just finishing two years on Tymlos and am faced with the awful choice of Prolia or Evenity. I have controlled heart disease (cardiomyopathy) and am doing well in that regard. Because of the cardiac warning on Evenity, some practitioners will not prescribe it for me, although my endo is willing because my cardiologist says given my recent test results, he doesn't see me as a heart attack or stroke risk. Then, of course, he reminds me that he's "just the plumber," not an expert on osteoporosis, so his opinion that Evenity would be safe for me stops being entirely reassuring. I've seen a study stating that Evenity might NOT actually cause cardiac issues, but I haven't seen anything definitive yet.

Where Prolia is concerned, I am worried about consequences to my immune system, as it is a documented infection risk, all sorts of things from cellulitis to endocarditis. I have lupus and two other autoimmune diseases, as well as unexplained skin problems, and I am already on Entyvio, which is a minor immunosuppressant (gut only) for UC. My allergist calls my immune system hyperactive, as I've become hypersensitive to everything: odors, most every airborne allergen, the sun, detergents, etc., etc., etc. Sometimes just pressure on my skin will start rashes.

Also with Prolia there's the documented nightmare of vertebral fractures if one has a bad side effect and has to go off it. My endo has told me that if I have to stop Prolia, I will have to start Reclast, which is a bisphosphinate that can cause osteonecrosis of the jaw and atypical femur fractures.

Of course, both Evenity and Prolia also can cause osteonecrosis of the jaw, though Prolia more so than Evenity. And both can cause atypical femur breaks, though I haven't been able to find a statistic showing which drug is more culpable in that regard. Both also can cause so-called "hypersensitivity reactions" like hives, rashes, shortness of breath, though I don't know which drug is worse that way either.

As for joint and muscle side effects: I am 73 years old, have lumbar stenosis that causes me pain from the waist down, and it gives me the willies to hear from some MayoConnect folks that both Evenity and Prolia can cause severe bone & muscle pain. But my osteoporosis is severe enough (T score -3.4 in total hip) that I need to be on a drug.

Is there anyone out there who can help me decide which drug to use? I've watched medical videos (Dr. Doug Lucas and Dr. Ben Leder) and tried to educate myself and I still worry that I'm in trouble no matter which way I go. My 2 years of anabolic (Tymlos) helped my spine but got me only minimal gains in my hip/femur. Bottom line is that my endo is leaving this decision up to me.

One other thing: I have read with interest posts re: using low doses of Reclast, but am wondering if anyone knows whether Prolia or Evenity doses can be lowered, and if so, whether that's effective.

Thanks in advance for any help you all can offer!

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Profile picture for dvargo @dvargo

Doctors are not trained on causation or natural approach. They treat the symptoms. Why not do both, holistic and traditional?

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Hi, @dvargo: I was with an integrative med doc for years, and this is something even she couldn't help me with because of the cardiovascular warning on Evenity. My osteoporosis is pretty bad, and supplements & exercise are only going to go so far. Which brings me to this juncture...

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Profile picture for mayblin @mayblin

Hi @bayhorse, choosing the right treatment can feel really complicated when you are managing other health issue at the same time. It can definitely feel overwhelming - I know I would if I were in your shoes. The key is to work with a physician who is well versed in both medications and your underlying medical conditions. I know even finding the right doctor can be a challenge in itself!

Have you watched the YouTube video on osteoporosis drugs and cardiovascular diseases?


at 27:51, the presenter discussed romosozumab's (evenity) effects on cardiovascular risk. The information comes from 2024 Santa Fe bone symposium and may be useful to you.

There have been studies on bmd loss after discontinuation Forteo without any follow-up antiresorptive therapy. On average, the lumbar bmd declines about 4-7% within the first year, with continued loss thereafter. Most studies showed a return to baseline within 24-30 months if no antiresorptive follow-up. However, the monthly rate of decline wasn't calculated or was difficult to track (may not be linear), so it's hard to say exactly how long one could wait before taking any action. There seems to be a lack of direct studies on Tymlos in this area, however, teriparatide (Forteo) offers the closest available comparison.

I truly hope you will soon find a path forward that you feel comfortable with, with the help of your physicians and any other specialists. Wishing you all the best!

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Thank you SO much for this info, @mayblin. How did you find this stuff? I have been digging around and digging around and came across nothing, nil, nada! You're a genius as far as I'm concerned.

I called both Amgen and Radius Health (Tymlos manufacturer) for recent info on cardiac events and post-Tymlos bmd loss, and neither the Amgen nor the Radius rep could offer me any information. In fact, the Amgen nurse told me there was no cardiac event info from one of the Amgen-sponsored Evenity studies in the prescribing information pamphlet. So wrong!

Many thanks, again...

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Profile picture for hollygs @hollygs

Hi @bayhorse. I don't know if there are any definitive studies regarding the ideal window for starting a new medication after Tymlos. What I have read is is anecdotal - informative for sure but certainly not ideal. I just saw @mayblin's reply and hope you find it helpful. Do you have a pharmacist that might be able to help you obtain more information regarding that? Perhaps the pharmacist at the infusion center would be able to offer you some information - I found that to be the case for me.
I certainly understand how exhausting this can be. As always, wishing you all the best moving forward.

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Hi, @hollygs. I spoke to the nurse practitioner at my infusion center yesterday, as there's no pharmacist on site. She was very sweet, gave me what info she could about the way the center's patients have been reacting (immediate side effects) from both Prolia and Evenity but wasn't really able to tell me much else. Still, she tried...:-)

I did see @mayblin's post, and it was very helpful. I'm just about to check out the YouTube video on adverse cardio events -- it's the kind of info I've been looking for. The NP at my cardiologist's office was going to try to find out if there's a cardio in the Austin area who would have experience with Evenity and would be able to address the risk level, but she said she wasn't hopeful there was any such person. Meaning cardiologists don't deal with osteoporosis drugs even if their patients are on them. No big surprise there. Still, I'm hopeful she will find someone a bit better-versed than my own cardiologist, who is a good doctor but (understandably) solely occupied with his specialty.

Thanks much again for your good wishes... I wish you the same! 🙂

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Profile picture for bayhorse @bayhorse

Hi, @dvargo: I was with an integrative med doc for years, and this is something even she couldn't help me with because of the cardiovascular warning on Evenity. My osteoporosis is pretty bad, and supplements & exercise are only going to go so far. Which brings me to this juncture...

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I was unaware the osteoporosis drugs can cause cardiovascular problems. I wonder why that is? The drugs speed up or slow down bone remodeling and I have to wonder how that ties into the heart?

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Profile picture for bayhorse @bayhorse

@kallettla, thanks so much for responding. Would you mind letting me know what your cardiovascular issues are? The cardio warning is what's stopping one of my docs from giving me a go-ahead on Evenity, which is the drug I would rather take than Prolia. (I have already finished 2 years on Tymlos, which is the daily injectible like Forteo.)

Thanks much for weighing in. I wish you all the best of health!

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I have high LP (a). I have calcification in my aorta and carotids blocked to about 65% on one side and 60% on the other. I had a rest done by accident which showed the my prothrombin was high and I am at risk for blot clots. I went to a hematologist fof that and they did no further testing. I think because I am in decent shape and thin, Dr's look at me and think I am fine. I have an appointment with a preventative cardiologist in September because my cardiologist told me he "doesn't do aortas". I said that it is attached to the heart and he said he knew. I have been trying to get in with a cardiologist for a couple of years now! I luve in an area with a lot of old people. I had some radiating pain in my back twice. The second time I went to the ER. J had had an ultrasound and stress tests. Some Dr's read that I had a dead spot in my heart and they put me in the hospital. 911 workers told me I didn’t look like someone gaving a heart attack. I will keep it short, but I won't go to the ER again unless I am out cold and someone calls 911. It was tortuous. There was so much confusion. A Dr finally released me and told me what Drs were looking at was intenuation, not a dead spot. He released me anc they called me back because someone contaminated a blood sample and they admitted me again to watch me. I was in the overflow basement with curtains between us. And I have a severe fragrance allergy. It was just hell. Sorry to go on and on!

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Profile picture for bayhorse @bayhorse

@hollygs, thank you once again for your kind response. I am having a heck of a time finding an expert anywhere in the whole state of Texas who is not booked through June of 2026 where new patients are concerned. Were you an established patient with the wonderful doc who gave you a quick video visit? Some I've contacted won't do telemedicine with a new patient, and if you were a new patient with this doc, please tell me how you convinced him to see you! 🙂

I am stressing something awful over this, which I know is so counterproductive and unhealthy. Today, the endo who originally said she'd prescribe Evenity backed off from that, and my rheumatologist is discouraging me as well. They will give it to me if I truly want it, but at the same time keep telling me "the standard of care is NOT to prescribe Evenity to anyone with a cardiac issue." When I bring up the contradictory study results (re: cardiac events with Evenity), they acknowledge them. But because the "standard of care" rules have not officially changed, I am being left on my own to choose. Enormously stressful and frightening

I am considering doing what they would like -- a Prolia injection -- just to buy myself some time to find a real expert. But am not happy about that at all.

In any case, thank you for listening to all this, and thank you for understanding what a rough go this can be! I wish you all good health! 🙂

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I live in Lucas, Texas, in the Dallas metroplex. I needed an expert on osteoporosis as I had a T-score of -4.7. I heard a podcast with Dr. Keith McCormick in 2022 and was so impressed we booked a trip to Massachusetts to consult with him. (He also does phone consultations after receiving all the test results he. needs). He developed osteoporosis at age 45 in one hip after being an athlete all his life. He plunged into the study of the condition and had many recommendations. I had not taken any medication in the 20 years since I was diagnosed. The first thing he said to me was I had no choice, but to go on medication. He said Tymlos was best since it produced better results than others. I trusted him and followed his plan for me. I did the Tymlos injections for two years and went from -4.7 to -3.8. I was very pleased with the gain in bone. I have now started Evenity injections for one year and will next do what Dr. McCormick recommends. He has written two books. The first, which I have, is "The Whole Body Approach to Osteoporosis". I have not read his 2nd book "Great Bones". The more you read and learn about osteoporosis, the better your decisions.

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Profile picture for bayhorse @bayhorse

Thank you SO much for this info, @mayblin. How did you find this stuff? I have been digging around and digging around and came across nothing, nil, nada! You're a genius as far as I'm concerned.

I called both Amgen and Radius Health (Tymlos manufacturer) for recent info on cardiac events and post-Tymlos bmd loss, and neither the Amgen nor the Radius rep could offer me any information. In fact, the Amgen nurse told me there was no cardiac event info from one of the Amgen-sponsored Evenity studies in the prescribing information pamphlet. So wrong!

Many thanks, again...

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Haha, just happy I could help! The reason you couldn't find the information you're looking for is, because it doesn't exist!

I might eventually need evenity, but for now I'm keeping an eye on updated data regarding its cvd risk, as I have existing atherosclerosis. I came across a retrospective study based on post-marketing data that you might find useful:
https://pmc.ncbi.nlm.nih.gov/articles/PMC11647516/
Table 1 provides a breakdown of existing medical conditions and medication histories. In the discussion section, the authors also shared their interpretations of the cvd findings from ARCH trial (linked video in my previous post), along with limitation of their retrospective analysis.

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Profile picture for bayhorse @bayhorse

Thanks, @dcg. I've read both and spoken at length to patient info people at Amgen, and am still not getting certain questions answered about Evenity. For example, no one is willing to look at the after-market statistics re: cardiovascular events, even though the stats must be there. A supervisor (patient info department) was supposed to call me last week and never did. Worst of all, the Amgen nurse who I was talking to about Evenity gave me some wrong information, which I discovered when I read the study data in the prescribing info. So disappointing and exhausting...

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Hi @bathourse, I agree it's extremely frustrating! I was attempting to help you consider what you/your Dr is wanting to accomplish by changing your meds to Evenity or Prolia. According to the literature out there, one is to help build your bone density and the other is to help keep the bone density you have. I've been on Evenity for 10 months, my next dexa-scan is in Oct so will see how effective it has been at building bone density for me. I'm going to need to decide what to follow Evenity with to help "lock in" any gains. I have no desire to be on Prolia the rest of my life so I'm evaluating Reclast.....

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Profile picture for mayblin @mayblin

Haha, just happy I could help! The reason you couldn't find the information you're looking for is, because it doesn't exist!

I might eventually need evenity, but for now I'm keeping an eye on updated data regarding its cvd risk, as I have existing atherosclerosis. I came across a retrospective study based on post-marketing data that you might find useful:
https://pmc.ncbi.nlm.nih.gov/articles/PMC11647516/
Table 1 provides a breakdown of existing medical conditions and medication histories. In the discussion section, the authors also shared their interpretations of the cvd findings from ARCH trial (linked video in my previous post), along with limitation of their retrospective analysis.

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Thanks once again, @mayblin. I bow to your research talents!

I am having a bit of trouble understanding the stats in the study. It seems a lot of people had cardiovascular events while on Evenity, yet the study conclusion is somewhat the opposite. I must be misreading the charts and/or interpretation and will have to take a second (or third) look!

You probably have stated this already, but I can't remember if I've read it: What are you doing to treat your own osteoporosis, given that you have cardiac concerns?

Wishing you all the best, and with gratitude for your assistance!

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Profile picture for dgc @dgc

Hi @bathourse, I agree it's extremely frustrating! I was attempting to help you consider what you/your Dr is wanting to accomplish by changing your meds to Evenity or Prolia. According to the literature out there, one is to help build your bone density and the other is to help keep the bone density you have. I've been on Evenity for 10 months, my next dexa-scan is in Oct so will see how effective it has been at building bone density for me. I'm going to need to decide what to follow Evenity with to help "lock in" any gains. I have no desire to be on Prolia the rest of my life so I'm evaluating Reclast.....

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Thanks much, @dcg. I'm wishing you all the best on your next dexa. I had been hoping for Evenity because it seems to be the fastest bone builder, and I certainly need help in that department. Sincerely hope it is doing a good job for you!

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