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Evenity worked for me: Why I chose medication for osteoporosis
I just completed a year of Evenity and had my f/u Dexa. My first Dexa was in 2015 when I was in my 50s. My OB/GYN suggested it as I had broken a bone in my 40s. That Dexa showed osteopenia in my lumbar spine with a score of -2.4. At that point, I was adamant that I would not take any medication. I increased my calcium and kept up my running and weightlifting. I also decided that since I wasn’t going to take any meds, I wouldn’t bother with f/u Dexas. I started seeing a new NP who convinced me that I should see what my scores were in 2023. I was shocked to see that my lumbar spine was now-3.4. That was a real wake up call! Severe osteoporosis.
So I was still set on not taking medication, especially after reading a lot of the discussions on this site. I spent most of 2023 running more, lifting heavier, yoga, Algae Cal and Strontium (yes I know Strontium shows false strengthening). I hiked in NC that summer with a heavy backpack. But in the meantime, I read all of the books recommended, researched the medications, and made an apt with the osteoporosis center at our large teaching hospital. My plan was to see if I could improve my results naturally. I would pay for another Dexa out of pocket to see if anything changed.
In Oct I went to see the provider that runs a large osteoporosis clinic. I told her my plan. She was very honest with me. She said I would be wasting my time and money. She felt that my osteoporosis was genetic. I was already doing everything I could including bio identical hormones and my score was worse. She said to stop the Strontium which I did. She said that osteoporosis was a chronic condition. You can improve it with medication but once you stop, you will begin losing bone again and go back down. I would have to be on something for the rest of my life. I elected to start with Evenity. My labs were good and remained good. I had no side effects from the medication. I chose Evenity due to my Medicare coverage. I have Medicare A/B, plus a D plan and a gap plan. Tymlos and Forteo had large monthly deductibles. Evenity was covered at 100% because I went to an infusion center and it was covered under Part B and my gap plan. Also Evenity targets the lumbar spine and that was my biggest problem. Even though I had a lot of hesitation, I decided to trust my provider who follows a large patient population of osteoporosis. I was concerned about side effects but I pulled up the actual clinical trials and read them. The # of severe side effects were actually very low and were almost equal in the placebo and medication group. My provider confirmed that and said that my chances of a severe side effect would be very low but my risk of a fx was very high and that would change my life. She said that the serious side effects were not showing up in the general population of people taking the medication.
My latest Dexa showed improvement in my lumbar spine to -1.8 (from -3.4). I will switch to Prolia next month. I would encourage anyone hesitant to start medication to read as much as you can and discuss with your provider. I also chatted with the infusion center nurses and other patients that I met at the center about Evenity and Prolia to see what their experiences were. Everyone said the same thing, that most patients do very well. Occasionally, someone needs to change their medication but that was rare. Also, I’m pretty healthy. There are some patients with multiple comorbidities and they might have more issues.
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@monkhhi. Thank you so very much for sharing your journey. My path was very similar to yours with diagnosis of osteoporosis in my late 50's and trying everything I could to avoid taking medication. I finally relented and took Fosamax for 5 years. That medication provided some benefit but not enough. I had an insuffiency fracture of the sacrum caused by pelvic radiation for endometrial cancer in 2021. My endocrinologist prescribed Evenity and I finished in late October. Like you I received my Evenity injections in an infusion center and the medication was covered 100% by my Medicare Part B and supplemental insurance. My next step is Reclast that I will start on December 4.
How are you feeing about all of this? Are you continuing with your activity including weightlifting?
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3 Reactions@monkhhi you seem well informed so I wonder what your plans are for dealing with Prolia rebound?
I wonder about this statement. Maybe the key word is "serious".
" She said that the serious side effects were not showing up in the general population of people taking the medication."
I think we have all read posts from people who have adverse reactions to one of the drugs but the doctors deny that it is from the drug. Are they really not showing up or are doctors simply denying reality? I am sure that whichever, the number is low but I want to be fully informed of benefits and risks.
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2 ReactionsThank you for sharing your osteoporosis story. I am 76. I had my first injection of Prolia after finishing evenity. Are you planning on staying on Prolia for the rest of your life or do you have another plan? I was toying with the idea of returning to evenity instead of a second injection of Prolia.....trying to buy some time before prolia for the rest of my life. Unlike you, I started with two years of forteo then 5 years of alendronate. My endocrinologist said reclast was out because I had already had 5 years of a bisphosphonate. My endocrinologist does not support my plan but will go with my decision if I want to go that route. I am going to contact Amgen today and see what they have to say since they make both products. I also need to see if my Medicare and supplemental will cover a second year. In addition, I started bhrt 2 months ago including testosterone pellets.
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2 ReactionsWow! Thank you for sharing! Great info on Evenity which I still have to consider as I have other serious health issues too. I could never do the prolia though 🙁 How long were you on bio-identical hormones before this and which ones? I wish my doctor was as good but she's not! So Evenity only targets the lumbar spine?
I wonder if you are replying to monkhhi.
Curious why you have a hesitation to start and stay on Prolia, and instead return to taking Evenity?
Actually, I feel great! I completed a 1/2 marathon last Feb and ran in our local Turkey Trot on Thanksgiving. Yes, I still do cardio weight training, not the heavy lifting like I used to do. I was not very athletic in my teens, but began running in my 20s, then started weightlifting in my 30s and yoga in my 40s. Now in my late 60s, I try to do one hr of something every day. Some weeks are better than others, but I always get back to working out.
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7 ReactionsIf and when the time comes that I stop Prolia, I will discuss my options with my care team and go from there.
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3 ReactionsI start Evenity tomorrow. Now I’m concerned with the post that says it works best for the spine. My T score on my spine is at zero (i assume thanks to my weight lifting and alendronate for three years.) My hips are -2 something. Did the T score on your hips change at all with Evenity? The surgeon wants my bones stronger before I do surgery.
Great on the half and turkey trot! My leg pain from stenosis is bad enough I’ve stopped running in June, after 35 years of running. Hard to not be a runner any longer, but 35 years is a good run, and maybe I can start again after the fusion. I’m 72.
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