My Experience with Evenity

Did you have any special conditions that helped insurance pay for the cost of evenity? I am 67 years old, just diagnosed with Osteoporosis, no other issues. T score of -2.7 on lumbar spine, hips and femur still Osteopenia. My doctor told me insurance would not cover Evenity ( Medicare Advantage) and my cost would be os about 70000 dollars!

@lauratys

I cancelled my appointment for my 10th shots because of debilitating joint and bone pain. My last shots (9th) were approximately 5 weeks ago. I still do not have any relief, I am in constant pain, late night and morning are the worst. I do have arthritis but my orthopedic doctor told me it is not bad enough to cause the extreme pain I am experiencing. I had EMG/NCV tests yesterday and was told there is no damage to my nerves or muscles other than slight neuropathy in my feet. At night and in the morning I am using a walker. I can't drive because of leg pain. After the 9th shots I developed arm, shoulder, and lower back pain. I too was repeatedly told that the pain I was experiencing was not due to Evenity. One of the infusion nurses told me my bone pain was a good sign - "that means it's working" I hope my pain diminishes over time because my health, at this point, is in shambles.

@mave14 I am so sorry for what you are experiencing but do so much appreciate your sharing your experience. Give it more time as it took several months 5-6 I think for me to start feeling “normal”. I have had so many tendon issues in knees and shoulders I am wondering if there is any correlation. I never had anything unless it was an injury from an activity I knew about. I wish you the best and pray that your discomfort subsides.

Did you have any special conditions that helped insurance pay for the cost of evenity? I am 67 years old, just diagnosed with Osteoporosis, no other issues. T score of -2.7 on lumbar spine, hips and femur still Osteopenia. My doctor told me insurance would not cover Evenity ( Medicare Advantage) and my cost would be os about 70000 dollars!

My Recent Experience on Evenity
I was diagnosed with -3.2 T score in my lower spine, -2.5 in my left hip and -2.0 right hip. The Endocrinologist recommended that I go on Evenity due to my age (65 1/2) and low T-score in my spine. I have high blood pressure that is controlled with Losartan and Amlodipine. My husband and I were assured that Evenity would not interfere with this. After much research and discussion with other friends and professionals, I decided to go ahead with the Evenity 1 x per month injections. The first set of shots went well. The injection site was a bit tender (upper arm) and I had some flu-like aches, but otherwise fine. Shot set #2 was terrible. My blood pressure spiked over a 2 week period, terrible headaches and extreme fatigue for approximately 3 weeks that put me in bed. Around week 3, I had contact with the Nurse's Hotline giving them symptoms of chest tightness, heartburn, and continued elevated blood pressure. They were aware that I was on Evenity. Needless to say, they told me to go to the ER. I was given and extensive cardio evaluation (spending overnight). Fortunately, all the cardio tests came back clear. In much discussion with the Endocrinologist, I stopped the Evenity and just started my first round of Fosamax. (1x week pill). So far the only side effects that I have are that I am so tired with very low energy and some shaking in my left leg; possibly due to the Evenity still in my system. Because of the shaking, my Primary referred me neuro to check for Parkinson's!! Yikes! That won't happen till September, so hopefully by then the shaking will be gone.

I am usually a pretty active and fit person, but for the last month, I have not been able to do much of anything...kind of counter productive for not being able to exercise to keep the osteo in check. I realize that every one is different and reacts differently to the various meds available for osteoporosis, but if I were to reverse things, there is no way I'd do the Evenity again. I will give the Fosamax a good try, but if the side effects don't improve, I will have to look at other options. Does anyone have any suggestions for natural ways of dealing with low bone density?

@betsyb1 I am interested in your results to Evenity because my blood pressure shot up and I got horrible heartburn. Also had shaking but it seemed to be more internal. That can be a sign of Parkinson’s. Did you have your test in September and get results? This all occurred after my 7th infusion. My doctor doesn’t think any of this is from Evenity but I don’t agree. Thanks for any information you can share.

@betsyb1 I am interested in your results to Evenity because my blood pressure shot up and I got horrible heartburn. Also had shaking but it seemed to be more internal. That can be a sign of Parkinson’s. Did you have your test in September and get results? This all occurred after my 7th infusion. My doctor doesn’t think any of this is from Evenity but I don’t agree. Thanks for any information you can share.

Thank you! I am just wondering if there are others that have had similar issues and again, give it time. I thought I had ruined my health and not sure if I compromised my tendons from Evenity or not. I have longitudinal tears in three tendons in my right shoulder which is odd. I did have rotator cuff surgery on my left shoulder and that was after Evenity but I had a full thickness tear which I can't pinpoint to any specific event but maybe my tendons have gotten less durable? idk as I am not a medical professional and Evenity hasn't been around all that long. I hope anyone who is on this thread and has had a similar experience will share. I felt pretty much like the professionals thought I was a "head case" so felt validated though these online discussions. Appreciate all who share.

@lbegg I always find it interesting when docs say not from what they prescribe. Not all do, but some dismiss patients experience. I have had some side effects that I think are evenity related that are not listed as common. Have also had 7 months of shots. Now researching what to go on so I’m prepared to discuss with dr. Next scan in early January.
I think these convos are critical to understanding and connecting and comparing notes! This is the first osteo meds I’ve been on. 75, 76 in January