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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.

pitac | @pitac | Jan 1 3:22pm
In reply to @windyshores "@pitac For most of us who eat well, exercise and take supplements, loss of bone density..." + (show)
@windyshores

@pitac For most of us who eat well, exercise and take supplements, loss of bone density due to loss of estrogen at menopause does tend to eventually require meds. It is wonderful that you are having success with your regimen,

I think it is good for all of us, me included, to stay away from definite statements since our situations vary so much. For me, meds saved me after several fractures- despite years of good diet, walking, tai chi and supplements. For others, a holistic approach might still work - as it did for you- if bone loss is still relatively mild. I would add that for many of us, the meds' side effects are very tolerable, but some have serious issues- and tend to post the most often on forums! Again everyone is different!

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@windyshores. Well, everyone's a critic about something. I only posted my experience to a concern of another member about medications and mentioned twice they are medication resistant. The obvious, "everyone is different" statement is condescending and unhelpful for those looking for alternative treatments that have been proven to work for a large number of people. Im no anti-med advocate by any means, i take them when necessary. Lucky for me, so far, nutritional deficiencies were met and reversed, strength gained, problem solved. So far. It CAN be done and has been by many.

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1 reply
windyshores | @windyshores | Jan 1 6:24pm
In reply to @pitac "@windyshores. Well, everyone's a critic about something. I only posted my experience to a concern of..." + (show)
@pitac

@windyshores. Well, everyone's a critic about something. I only posted my experience to a concern of another member about medications and mentioned twice they are medication resistant. The obvious, "everyone is different" statement is condescending and unhelpful for those looking for alternative treatments that have been proven to work for a large number of people. Im no anti-med advocate by any means, i take them when necessary. Lucky for me, so far, nutritional deficiencies were met and reversed, strength gained, problem solved. So far. It CAN be done and has been by many.

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@pitac At the end of my post I wrote "Everyone is different!" I have no idea why that is interpreted as condescending. It was supposed to indicate that many paths are valid depending on individual situations.

This is a thread about how Evenity "worked" for someone. All viewpoints are welcome. Mine is based on 7 spinal fractures despite doing all the right things: cancer treatment made your approach insufficient for me. I am glad things are working for you.

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osteoresearch | @osteoresearch | Jan 2 6:54am
In reply to @pitac "I reversed Osteoporosis back to Osteopenia on diet and walking alone. Almost all women over 50..." + (show)
@pitac

I reversed Osteoporosis back to Osteopenia on diet and walking alone. Almost all women over 50 have osteopenia according to drs and literature i have read, thats normal. As long as you are walking, doing a little bit of weight bearing exercise and have a great diet with a calcium supplement you probably never will develop osteoporosis and if you do, it can be reversed naturally. The affects of the meds can be extreme.

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Can you plz share your numbers showing improvements along with timeline and routine? This is such a great forum to share our outcomes if we share the fact’s alongside.

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2me | @2me | Jan 2 6:56am
In reply to @JustinMcClanahan "Hello @2me, welcome to Mayo Clinic Connect. I moved your discussion and combined it with an..." + (show)
@JustinMcClanahan

Hello @2me, welcome to Mayo Clinic Connect.

I moved your discussion and combined it with an existing discussion started by @monkhhi titled:

"Evenity worked for me: Why I chose medication for osteoporosis"
- https://connect.mayoclinic.org/discussion/evenity-worked-for-me/

I moved your post to this discussion so that you could read @monkhhi's experience that sounds very similar to yours. It can be easy to get caught up in reading many experiences of side-effects and delay treatment as a result. @monkhhi started this discussion to highlight the same concerns on delaying treatment from reading the bad experiences but having some regret on waiting because they are doing well on osteoporosis treatment. It can be important to read about the positive experiences as well.

@naturegirl5 shared their positive experience with osteoporosis treatment as well.

@2me, you ask a great question about trying to get informed for upcoming appointment to try and make the best treatment choice possible for yourself. Discussing the potential side-effects is a good start and what you should be looking for and alternatives moving forward should you experience unpleasant side-effects. Another would be balancing the pros and cons of potential fractures while delaying treatment vs. risking starting treatment to improve your bone health. @2me, if you are comfortable, have you been diagnosed with osteoporosis or are you still in the osteopenia phase?

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I’m sorry…I thought I had responded to this great reply!
Thank you, Justin for moving my post, and for the great suggestions. Osteopenia. My spine results are good; my hip, not so much.

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susanfalcon52 | @susanfalcon52 | Jan 2 7:41am
In reply to @pitac "I reversed Osteoporosis back to Osteopenia on diet and walking alone. Almost all women over 50..." + (show)
@pitac

I reversed Osteoporosis back to Osteopenia on diet and walking alone. Almost all women over 50 have osteopenia according to drs and literature i have read, thats normal. As long as you are walking, doing a little bit of weight bearing exercise and have a great diet with a calcium supplement you probably never will develop osteoporosis and if you do, it can be reversed naturally. The affects of the meds can be extreme.

Jump to this post

I’m afraid that my decades of walking, weight lifting, diet monitoring, and calcium ingesting did not save me from osteoporosis.
Once diagnosed, intensifying all those things did nothing to reverse my osteoporosis.
Drugs did. I was very fortunate that I tolerated the drugs well.

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monkhhi | @monkhhi | Jan 2 8:00am

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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2 replies
windyshores | @windyshores | Jan 2 1:31pm

@monkhhi The results posted from Evenity continue to astound me.

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spiderplant | @spiderplant | 6 days ago
In reply to @windyshores "Osteoporosis has no symptoms. I felt fine and was doing sword tai chi classes when I..." + (show)
@windyshores

Osteoporosis has no symptoms. I felt fine and was doing sword tai chi classes when I fractured three vertebrae (not in the class, just one unwise movement at home).

If your DEXA score is low (and FRAX score is high) I hope you can get a prescription and authorization for a bone builder like Forteo, Tymlos or Evenity. Primary care doctors often prescribe Fosamax or Prolia. It can help to see an endocrinologist.

Forum posts tend to be negative because people with bad experiences tend to post more. Tymlos literally saved my life and I have also done some Evenity and Reclast. You may need less treatment than I do with several fractures, but wishing you good luck in starting!

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Yup! So important to share this with people, windyshores!!!

I'd not taken any medication for anything, had no broken bones, eat a Mediterranean diet and was fit and lo and behold was sure the Dexa machine HAD to be off when I got results claiming I had osteoporosis in my late 50s. The idea of monthly shots or infusions was startling.

I found these discussions SO helpful and supportive. It for me totally normalized this whole experience / process so thank you!

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juanitalinda | @juanitalinda | 6 days ago
In reply to @monkhhi "My experience sounds similar to yours, Susan. I also had decades of running as well as..." + (show)
@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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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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2 replies
monkhhi | @monkhhi | 5 days ago

@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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