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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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My understanding was that you can’t take Evenity for longer than 12 months. I am planning on staying on Prolia as long as it works for me and as long as I am tolerating it. My provider has patients that have been taking it for 10-12 yrs without issues.
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4 ReactionsUnfortunately, my 3 Dexas were done at 3 different facilities and each facility looked at different data points. My most recent Dexa at the teaching hospital showed my hips as normal. It also noted improvement in both femoral necks from -2.5 to -2.2. My Dexa from last year didn’t show hips but had femoral neck readings. Basically, I showed improvement in all areas with my lumbar spine the most dramatic.
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6 ReactionsThanks for the Prolia info from your provider.
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1 Reaction@monkhhi Perhaps you are already aware of the potential dangers involved in stopping Prolia. If so you can stop reading.
If not then you need to know that there are no guaranteed safe ways to stop Prolia. If you stop without another med to stop the "post Prolia bone loss" you will lose bone very rapidly. You may even lose bone past where you were before you started the Prolia.
More importantly you will also risk the special "post Prolia multiple spinal fractures" disaster. I've seen reports of anywhere from 2-10 spinal fractures when people stopped Prolia without starting another med right away.
Even if you take the strongest bisphosphonate (Reclast) you still may lose a lot of bone and have multiple fractures. Sometimes even two doses of Reclast won't stop the bone loss. My doctor estimates that up to 20% have trouble with post prolia bone loss even though they take Reclast right away.
No, this doesn't happen to everyone. Maybe it's not happening to very many people? I don't know if anyone is tracking this statistically?
It is easy to find quite a number of people reporting this happened to them on the various osteoporosis forums. It is acknowledged by researchers and knowledgeable doctors but somehow some doctors forget to mention these little details. Just saying.
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3 ReactionsI am on Forteo. Ending end of December.
Anyone experience extreme fatigue? I can't even do dishes without breaks.
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1 ReactionI will add to what @awfultruth wrote by saying it seems people come on here wanting to switch to something after Prolia but there is no good option other than Reclast. This is what someone called the "Prolia trap."
Ben Leder MD has a YouTube video that shows the potent effectiveness of Prolia which is positive. However, he also discusses rebound and say he doesn't use it as much anymore. Too bad- when Prolia was introduced it was the new miracle drug but they later discovered rebound. (Just like they discovered atypical femur fracture and jaw necrosis on anti-resorptive).
When I am 80 I would consider Prolia though I have a cranky immune system that might not react well to it!
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2 ReactionsHas anyone taken the slow route of estrogen for osteoporosis?
Might not be as good as evenity (what the endo wants me to take), but slower bone loss if you stop. I don’t like that I would only get 1 year and then am in the medication trap of needing to take something else. I can’t take tymlos or fortes because I had radiation this year near spine. I am now at -3.5 so know I probably have to start something soon.
oops! I will check!
The infusion center is not a requirement of coverage but a logistic issue. Many doctor's offices do not want the hassle and expense of ordering and keeping the medication, instead prefer allowing the infusion center to coordinate this for multiple patients.
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2 ReactionsI have a call in to amjen who makes evenity and prolia to review that. Somewhere here I thought I read a post saying that amjen is exploring that
Could be mistaken.