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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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Good for you. Please let me know how you make out. I am very reluctant about Evinety because "It acts like Prolia in the last half of treatment" and I did not have a good experience on Prolia.
She recommended Prolia as f/u to Evenity. She follows a large caseload of patients and the vast majority do well. Reclast was another option but I wasn’t crazy about getting an infusion. I asked about “all of the terrible side effects” with Prolia and she was honestly surprised. She said that she has only had to take less than a handful of patients off of it due to side effect and yes, if I have to stop, I will need to immediately get on another treatment (probably Reclast), because I will very quickly lose my gains. I will need to be on something for the rest of my life. I was under the impression that I could just improve my score, stop medication, and maintain with my exercise, diet, supplements, and hormones. I didn’t want to hear that I had to continue medication but honestly, after I thought about it, I was already doing all of those things and I had lost so much bone strength. I also met other women at the infusion center who were on Prolia and doing great. I asked the NPs if they see a lot of patients on Prolia (answer-yes) and do they see a lot of problems (answer-no, but if I notice any issues, let the dr know right away). I don’t have any pre existing conditions, haven’t had chemo, radiation, steroid use, or kidney disease. So we’ll see how it goes. Talk to your provider about questions/concerns and good luck with whatever you decide!
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2 ReactionsOthers may have enough knowledge and experience to speak to the similarities of Prolia to the latter stages of evenity
Thank you for this information!!
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1 ReactionI don't like Prolia either. As the follow-up I am taking Alendronate.
just curious why you are switching to prolia if evenity is working
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2 ReactionsI truly appreciate your story, your information is so essential for people like me. I just realized after an appointment with my internist that Prolia would not be an option for me at all whatsoever. He encouraged the echolight scan which I am scheduled to have in February, and after we get the results of that, we can discuss the plan for moving forward I’m going to bring this Evenity up to him, and see if I am a fit for this drug. Like you, I am at -3.3. I am in my 50s. I had the scan done two years ago and was given a shock of my life, I had already broke two bones in my feet, and seeing that scan totally took me back to reality, although I don’t tolerate medication’s well at all, I’m going to see if this might be an option for me to help slow the bone issues. I greatly appreciate your story and information.
Just fyi, Tymlos and Forteo were also my options. But because I’m on Medicare, they both would have fallen under my part D prescription plan. I have a very inexpensive pharm plan because I was not on any medications and my medication copays would have been very costly. If you have commercial insurance Tymlos and Forteo might be better from a cost perspective. In my case, cost was a major factor in my choice.
Has anybody tried stem cell therapy for osteoporosis? If anybody can chime in on this and what your experiences were, that would be so helpful. Unfortunately, my doctor does not feel comfortable giving me any of the medications that are on the market, I am med resistant to a lot of things so unfortunately, a lot of these therapies will not be something I can take part in. Any information is helpful.