Evenity worked for me: Why I chose medication for osteoporosis

Posted by monkhhi @monkhhi, Dec 1, 2024

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.

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

@monkhhi

@juanitalinda So sorry all of that happened to you! I can’t imagine how painful that must have been. I had great success with Evenity and I hope that you do as well.

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Thanks for the well wishes.

While I knew that osteopenia/osteoporosis were real, I felt I was healthy and active.
Until I wasn't.

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@juanitalinda

I like your comment of risk/benefit. It's kinda how you weigh the benefits and risk.
There is the benefit of avoiding medications and possible side effects vs the benefit of avoiding fractures. I decided on Evenity and can't wait for my DexaScan in a few months.

For me, the possible side effects of the medication were certainly less severe than the benefit of avoiding another hospital stay with the possibility of another fracture.

Actually, my bone doctor pointed out that osteoporosis can be FATAL, and in my case it was a real possibility in the next few years. He felt Evenity was the fastest acting and therefore best choice for me.

For example, I often hike with my dog where there is little/no cell phone service. I leaned over to pet my dog and my femur broke into at least 5 pieces. Fortunately, my phone was in my pocket and still working and I had a cell phone signal. If not, I could have been there for hours.

As it was, I was taken to the hospital where I stayed in skilled nursing for a month. Those nurses and therapists were bossy as heck .... but the statistics show that lots of people with hip/femur fragility fractures die within the first year. (Look it up ... you don't want to be there.)
10 months later I was in the bathroom putting on deodorant when I coughed. I heard a pop from the fractured vertebra and fell .... fortunately, I did NOT hit my head on the porcelain tub or toilet. Once again I was lucky. I know someone who did die from falling in a tub.

We all have to weigh the risk vs benefits based on the information at hand.

PS .. I do have a family history of osteoporosis so had exercised, walked, weight lifted, taken calcium supplements and Vit D and HRT. That background also factored into my decision.

If Evenity doesn't work, I am going to be seriously depressed.

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Juanitalinda,
I also had success with Evenity. No side effects. I’m on Reclast now.
I hope that you also have improvement with Evenity.

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@monkhhi

My experience sounds similar to yours, Susan. I also had decades of running as well as heavy weight lifting. I followed a very healthy diet, took supplements, and bio identical hormones. Unfortunately it was not enough to overcome my genetics. I decreased from-2.4 to -3.4 in my spine and I was at a severe risk of fracture which would have changed my life. I’m a risk/benefit type of person and my risk of fracture was very high versus a very low risk of side effects from the medication. Evenity improved my spine to -1.8.

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May I ask what medication you are taking after completing Evenity?
Thanks : )

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@juanitalinda

I like your comment of risk/benefit. It's kinda how you weigh the benefits and risk.
There is the benefit of avoiding medications and possible side effects vs the benefit of avoiding fractures. I decided on Evenity and can't wait for my DexaScan in a few months.

For me, the possible side effects of the medication were certainly less severe than the benefit of avoiding another hospital stay with the possibility of another fracture.

Actually, my bone doctor pointed out that osteoporosis can be FATAL, and in my case it was a real possibility in the next few years. He felt Evenity was the fastest acting and therefore best choice for me.

For example, I often hike with my dog where there is little/no cell phone service. I leaned over to pet my dog and my femur broke into at least 5 pieces. Fortunately, my phone was in my pocket and still working and I had a cell phone signal. If not, I could have been there for hours.

As it was, I was taken to the hospital where I stayed in skilled nursing for a month. Those nurses and therapists were bossy as heck .... but the statistics show that lots of people with hip/femur fragility fractures die within the first year. (Look it up ... you don't want to be there.)
10 months later I was in the bathroom putting on deodorant when I coughed. I heard a pop from the fractured vertebra and fell .... fortunately, I did NOT hit my head on the porcelain tub or toilet. Once again I was lucky. I know someone who did die from falling in a tub.

We all have to weigh the risk vs benefits based on the information at hand.

PS .. I do have a family history of osteoporosis so had exercised, walked, weight lifted, taken calcium supplements and Vit D and HRT. That background also factored into my decision.

If Evenity doesn't work, I am going to be seriously depressed.

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I really hope you have amazing gains on Evenity. I am sorry for your fractures. I have been on Evenity for 10 months. My spine was -4.5. No fractures. (yet) Keep in touch. I would love to hear about your gains!

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@pami

I really hope you have amazing gains on Evenity. I am sorry for your fractures. I have been on Evenity for 10 months. My spine was -4.5. No fractures. (yet) Keep in touch. I would love to hear about your gains!

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Wow! -4.5 is quite the score! Mine is 3.5 after Forteo, which was started when my spine gave out causing 13 consecutive compression fractures. I am currently back on Forteo while I wait for Evenity approval. Do you have a follow up plan for after Evenity? Any side effects noted? Do let us know your follow up density scores! Thank you for sharing. I keep waffling on the Evenity, but also scared about redoing Forteo.

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@pami

I really hope you have amazing gains on Evenity. I am sorry for your fractures. I have been on Evenity for 10 months. My spine was -4.5. No fractures. (yet) Keep in touch. I would love to hear about your gains!

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Pami, I also had a very low t score in my spine of -4.6. I went on Evenity for 1 year and now my t score in my spine is -3.3. I am now on Prolia and have had one dose so far . I will most likely have one more dose than move on to reclast.

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@broken13

May I ask what medication you are taking after completing Evenity?
Thanks : )

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I will be starting Prolia and will take that as long as I can. My provider has many women who have been on it for 10-12 yrs.

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@monkhhi

I will be starting Prolia and will take that as long as I can. My provider has many women who have been on it for 10-12 yrs.

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Thanks. My sister also did well with Prolia. I only took it for one shot and then near the end of the 6 month window developed jaw problems, so quite fearful to try that again, but that is also the recommendation .

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@broken13

Wow! -4.5 is quite the score! Mine is 3.5 after Forteo, which was started when my spine gave out causing 13 consecutive compression fractures. I am currently back on Forteo while I wait for Evenity approval. Do you have a follow up plan for after Evenity? Any side effects noted? Do let us know your follow up density scores! Thank you for sharing. I keep waffling on the Evenity, but also scared about redoing Forteo.

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I am wondering about another bone builder like Forteo or Tymlos. My kidneys aren't in the greatest shape so not sure what to take. I had Reclast years ago and then nothing (including bone scans for years) until I finally got a bone scan. It was bad 👎. I hope you are healing ok from your compression fractures.

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@kristie2

Pami, I also had a very low t score in my spine of -4.6. I went on Evenity for 1 year and now my t score in my spine is -3.3. I am now on Prolia and have had one dose so far . I will most likely have one more dose than move on to reclast.

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That is wonderful your body responded so well to the Evenity. I hope you get more gains on the Prolia. I will probably go on Prolia after Evenity. Let me know if you continue to improve.

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