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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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I tried Boniva, a biophosphonate in my 40s when I had osteopenia. I had too much bone pain right away so I stopped. 25 years later I’m at the end of the osteoporosis scale, so I got approved for Evenity. My dr said it was the only drug class that both tore down old bone and rebuilt new bone, and that’s what I needed. After a year I had good results.
Then she said I needed a maintenance drug so I didn’t lose my gains. Since I didn’t tolerate a different biophosphonate, Prolia was a good choice as I could take it the rest of my life, once every 6 months. Reclast was one shot a year for 2-3 years only, with a little more side effects. But I had a lot of bone loss and that probably wouldn’t be enough since I’m young, I’d end up on Prolia anyway. She said Prolia was studied more than a lot of the older drugs, and thought I’d do well on it with my other medical conditions. I have the autoimmune disease generalized Myasthenia Gravis, a seizure disorder, neuropathy and some other minor ones. I’m 5’1” 121 lbs and the regular doses were fine on me for both Evenity and Prolia. I’ve had no side effects except a slight sore arm which I rested a day. The only time I had a little flushing was when the syringe wasn’t brought to room temp first.
I always felt nervous considering a new med, but I’ve done my research, talked to my drs, pharmacist and a lot of people online, slept on it, did some more research, and made my decision. I can honestly say I don’t feel bad about any of the choices I’ve made, because I followed this process, and that’s about as good as it’s going to get
@hungrybirder, thanks for sharing. I wore out from searching a few days ago, and am gearing up to start looking again. If I find anyone who looks promising, I will let you know! Meantime all best wishes...
Hi, @hollygs: I took a break from thinking about osteoporosis drugs for a few days -- just couldn't handle it anymore -- so pardon my slow response. I am going to call Amgen tomorrow and see if I can get a few remaining questions answered. I had hoped my cardiologist would be willing to contact my old doc, the research director for Prolia & Evenity at Amgen, but I haven't heard back. I have an appointment with him (cardiologist) in a little over 2 weeks and will try to talk to him about this in person. I have unfortunately been trained (by long history with way too many doctors) not to ask a physician to go outside his normal scope or do anything "extra," so I am feeling a bit intimidated about asking cardiologist to extend himself and see if he can get something more than the usual warning about giving Evenity to heart patients.
I am scared about how long I can be off Tymlos before I start losing any gains. My endo & rheumy were kind of vague about it, so I might have to call the manufacturer.
I go for my Entyvio infusion (for UC) this week, and am grateful for your suggestion re: talking to the infusion center staff for a physician recommendation. And I never would have thought of Nextdoor, so thanks for that, too!
As to sequence, I really hadn't gotten that far. I was hoping to do Evenity, and if I reacted badly, I would succumb to Prolia. I'm really trying to avoid the bisphosphinates; my sister has jaw necrosis from Fosamax, and I don't know if that might be a family tendency. And since I have some necrosis in my hips, I am fearful of the dreaded femur break. Those were some of the other reasons I was wanting to avoid Prolia.
So, I still have some searching to do. I will keep you posted. Meantime, thanks again, and know I'm wishing you all the best of health! 🙂
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2 ReactionsHi @bayhorse. I'm so glad that you were able to take a break!
I felt some trepidation telling my new rheumatologist that I didn't want to be on Prolia, but her response was "Okay, tell me your thoughts." I was stunned - as you well know, that's not what we expect (but should.) I also knew that if she decided she wanted me on Prolia, I would put myself on Fosamax (I had an unexpired bottle) and look for a new doctor. Perhaps if you firmly tell your cardiologist your valid concerns about Prolia, he'll listen. Unfortunately, many doctors just don't understand the seriousness of osteoporosis and the medications used to treat it, so it's up to us to stand up for ourselves.
I've found it helpful to think of my doctors as people I've hired, and I expect them to provide me with the service I need. I have certain requirements that are not unreasonable. I make it clear that I mean business!
As always, best wishes to you moving forward!
I would spend the $13,000 and go with Dr. Lucas.
Hi, @dvargo: I think that's where I'm headed. I've asked for help and information from my local physicians repeatedly, to very little avail. And the search is getting exhausting. At least Lucas seems to be up on the research...
I'm sorry, but unless you are wealthy and you don't mind setting your money on fire, you'd have to be crazy to spend that much money on Doug Lucas.
Get a phone consultation with Dr. Keith McCormick. It won't cost you $13K, I can promise you that.
Hi, again, @hollygs. I have been trying to see myself as a consumer and the physicians as purveyors of services, all the while presenting myself as polite and clear about my questions and concerns. To little avail. After pushing back through a series of portal messages to my cardiologist, I finally got a response from a PA saying she would try to find out more. I wrote her a long note explaining exactly what my concerns were and asked her if she'd be willing to contact my old doc/Amgen director with specific questions from me. I sent the message and then felt so guilty about asking for this extra effort! Even though I know it's really not a heck of a lot to ask.
I am not really willing to take poor service, but I wish I had more energy to search out new doctors. It's seeming to be such a long process, again, a surprise in a city the size of Austin. I also feel lots of internal pressure to do something fast! I.e., I'm scared that I am harming myself by stalling on making a decision as to the new drug. I still don't have a clear idea of how long after my last shot of Tymlos I can go without losing gains. So if you or anyone else has found an actual answer to that question, please let me know!
Okay, I think I'm babbling at this point. 🙂 So I'll close here with a big thanks once again for your counsel, and for your support! I send best wishes...
Hi, njx58. I wrote to McCormick and he is booked out for a couple of months. I'm trying to figure out how long I can wait (be off drugs) before I start losing my Tymlos gains.
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2 ReactionsThanks much for your information, @sungaltoo. I'm glad to hear your choices have worked well for you, and I'm wishing you all the best!