Stopping Evenity Early

@me49
After my 4th Evenity injection and prior to 5th I started with lower back pain (also had UTI maybe not related). Now having to stay on a heating pad during the day. Debating whether to forego my 5th one this week. Dr doesn’t want me to stop, but I don’t want 8 more months of pain and wondering what new side effects are yet to develop.

@ess3 I try to look at the big picture. A heating pad vs a fracture. I’d try n stay the course. Warm Wishes

I had to stop after 4 treatments due to allergic site reactions that kept getting worse, and was advised by my dermatologist that the reaction could continue to get worse or I could have a systemic reaction. I decided to switch to Evista in the meantime until I can figure out what to do next; stay on Evista, switch to Tymlos, or go with Reclast. After this experience I'm reluctant to put anything else in by body that lasts anywhere from 6 months to 1 year without knowing what type of side effects that I could have. Oral biophosphanates are a no go for me. Pretty bummed out because otherwise I was happy with Evenity.

I am also discontinuing Evenity. I’ve suffered from EVERY side effect listed to the extreme…tendon issues (severe Achilles Tendonitis), unrelenting back pain, severe groin/hip pain, numerous migraines & now have developed a serious heart rhythm issue that’s currently being worked up. No more for me. Not sure where to go from here, ie: Prolia or Tymlos. But right now, that is the least of my worries..,.

So far, I have had 10 injections, and debating on stopping. I am so tired of the headaches and bone pain throughout my body. In my situation, I would inform the nurse of my side effects & when I would read my visit summary, no mention would be made of my concerns. I can't see taking the last 2 injections because then (as I understand) patients are then put on another drug to maintain/avoid losing the bone gain.

@1950usa I felt much like you after 10 injections. I had so much knee pain that it was a constraint struggle to exercise. My knees felt so weak that I felt like I might fall stepping up on anything.

I did find something that helped me and that was beginning to take glucosamine and chondroitin supplements. I just had my eleventh shot two weeks ago and while my knees still hurt, they are not nearly as uncomfortable as they were. I get my last shot in two weeks and see the end of the tunnel. I will be happy to stop.

Regarding follow up treatment, I was curious about how long I could wait to give my body a chance to recover after the Evenity. I found out that it’s important to do the Reclast within a couple of months because our bodies will ramp up bone breakdown after a period of intense bone building. Our bone metabolism is not in equilibrium hence the need for an anti-resorptive immediately. Not what I wanted to hear but it makes sense.

@oopsiedaisy Good morning! I am sorry for what you have experienced but I also had the same sort of adverse reactions. I quit after 11 months and switched to Actonel but waited a couple of months as I felt like I had ruined my health and it was uncomfortable to even get dressed. Evenity took me out of osteoporosis range and I have continued to hover between osteopenia and osteoporosis in all DEXA scanned areas for almost three years now. I would NEVER do Evenity again as my muscles, bones and joints made it so difficult to move. I always have exercised, skied, run, mtn biked, etc so it was 100% the Evenity that affected me. I am in a way glad I did Evenity as it increased my bone density mostly in my spine (-3.8 to -2.1) but it was hard. It is my understanding the gains are mostly in the first 6 months so I am glad I stopped after 11 mos. Probably should have stopped sooner. The Actonel I think is still affecting some muscles/tendons but exercise helps. Trust what your body is saying. Prolia has been recommended but I am absolutely not doing that. My best to you.

@lauratys Thank you for the good wishes. I had a vertebral fracture and the pain and disability it caused were so much worse than these side effects. I have one more shot in two weeks and I am done so I am nearly there.

I should be hearing early next week whether two years of anabolic treatments (abaloparatide, teraparatide, and Evenity) have been successful.

I feel so much better than I did two years ago and have fine tuned everything in my lifestyle and worked very hard to improve my overall health physically and mentally. I feel very optimistic, hopeful, and confident about the future.