Prolia vs. Evenity
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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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...
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...
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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2 ReactionsI 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?
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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1 ReactionI 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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2 ReactionsHaha, 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.
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.....
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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1 ReactionThanks 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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