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!

Like Helpful Hug

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

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

REPLY
Please sign in or register to post a reply.