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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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Did you have Evenity for the entire year and then Tymlos also for 1 year instead of 2 years? Could you share the bone-building results?
I’m about to complete Evenity and am deciding if I need to go with Tymlos or Reclass due to my severe osteoporosis and spine fractures. So far, the treatment sequence seems to be Tymlos first then Evenity. Yours seems a rare case and I appreciate your input. Thanks!
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1 ReactionHi @yingjichi Yes, I completed the entire year of Evenity and almost one year of Tymlos. You can find my results under the post "Prescribed Tymlos after Evenity." To my knowledge, that sequence is very rarely
used. I think your imaging after you complete Evenity will be the deciding factor in what medication would be best for you moving forward.
Best wishes to you.
Thank you very much for the response. You mentioned Imaging as a factor for future treatments. Did you mean DEXA?
Yes, DEXA and TBS. Your doctor may also order bone markers. If you'd like to take a deep dive on this site, there's a lot of information! Just search for "Reclast or Tymlos after Evenity" and if you're interested, "Bone Markers." Another important thing to discuss with your doctor is what the long-term plan is. It's also good to see what your out-of-pocket cost will be for Tymlos and Reclast.
@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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2 ReactionsHi @bayhorse. I changed my insurance, and the doctor who prescribed Evenity and then Tymlos doesn't accept my current plan and wouldn't take private pay. His plan was to have me on Tymlos for two years. Towards the end of the year on Tymlos, I went to see my endocrinologist and he freaked out and then prescribed Prolia. I was very confused and started researching and that's how I ended up here. I also had a pending appointment with my rheumatologist who focuses on autoimmune disorders to find out if he might prescribe Tymlos. Then I started looking for a new doctor, found two possibilities that appealed to me and called one. The woman who answered the phone has worked in this office for a long time, and she listened to my story. She said she would talk to the doctor immediately and call me back. I was stunned when I got an appointment the next day. So, truly I just got lucky.
You've certainly been given a challenge and your endo and rheumatologist are not cutting it when it comes to your treatment. I truly empathize with your stressing out about it. Have you searched for "metabolic bone specialist" in Texas? How about this?: Bone Health & Osteoporosis Foundation
https://www.bonehealthandosteoporosis.org/find-a-professional/
Have you looked on this site for suggestions on how to find a new doctor? You could also just start a new thread here.
You're obviously a very strong, resilient and capable person. I hope you remember that every day. Sometimes we need to get fired up, and sometimes we need to accept less than ideal and move forward. You may let go of the idea that you will rapidly deteriorate and fall apart if you don't start the right medication at the right time. You may get lucky like me.
Wishing you all the best moving forward!
Hi, @hollygs, and funny you should mention searching "metabolic bone specialists Texas," as I did that yesterday and it turned up the usual lists of university clinics and endocrinologists but lead to no physician who is specializing in osteoporosis except for 1 endo in Houston. And I have my doubts about the degree to which she is specializing. I called her office; she won't do telemedicine with a new patient and is booked out until June 2026. I booked an appointment anyhow, just in case I need something down the road. Also tried the Osteoporosis Foundation site about a year ago, didn't get much of anywhere. But maybe I need to start telling my story when I find a possible candidate.
I woke up 4 times last night worrying about this situation. I was appalled by things my endo either didn't know (for example that people were losing bone on Reclast after Prolia and some needed multiple Reclast injections in the first year) or had no curiosity about (like current cardiac event stats for Evenity, which I'm still trying to find). Here's the big irony: my long-ago menopause doc has been Amgen's research director for both Prolia & Evenity, and while she can't treat or advise me (no longer in clinical practice, etc.), she was kind enough to offer to speak to my docs if they had questions. Neither my rheumy or my endo had any interest in talking to her. I have since messaged my cardio asking if he can find another heart guy with some knowledge/experience with Evenity, but have little hope of getting him engaged. Everyone is just too damn busy.
I want you to know how much I appreciate your kindness, your advice, and your search suggestions. I'm going to give both resources another try. And I think I will post to this group and the cardio group re: searching for doctors. But meantime, please accept my gratitude. You're really helping me calm down! 🙂
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4 ReactionsHi @bayhorse. Thank you for the kind words. I've had similar experiences with doctors and it was shocking. This is one of many factors that contribute to the fear and anxiety felt by those of us with osteoporosis.
Speaking of Amgen, have you spoken with them? I found their patient services clinician to be incredible helpful. You just might find a new perspective from a different person. No
stone unturned etc. I also found the infusion center's staff to be a great resource and they might be able to recommend a doctor to you. Worth a shot. Ditto community websites like Nextdoor.
What would your sequence be after the possible choices?
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1 ReactionThis month will be my 7th set of injections for Evenity. I was told it was strictly for building bone mass and was not a preventative. I most likely will go on Prolia in January.
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1 ReactionHi @bayhorse
I too find it amazing that there is only possibly one doctor who claims "expertise" in osteoporosis in the Houston area. Surely there are a lot of us in that 4 million population base who are older women who might have bone loss. Funny you did what I did, booked an appointment in 2026; mine's only 7 months away!!! Currently I'm on my 3rd endocrinologist in 4 years. She seems ok although we don't agree on whether I actually have osteoporosis as I believe the bone scan reads one section of my spine incorrectly due to my scoliosis. Plan to see her before the "expert" in February and hopefully she'll ok another set of bone markers and a scan before telling me I need another infusion of Reclast. Good luck and please message me should you find a doctor in the Houston area.
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