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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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Wow, that's great news! Can I ask you is this doc a PCP, endocrinologist, or gynecolotist? Do you live in the United States?
I live in the US. My provider is a PA-C (certified physician assistant). Her specialty is orthopedics. She is with the Bone Health Program at an Osteoporosis Center that is affiliated with our large teaching hospital here in our state (SC).
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1 ReactionMy doc is a gynecologist. Keep in mind every doc will have their own beliefs and or opinions. Yes, I live in the states.
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1 ReactionThanks so much for your talking points! These will be very useful when I do have a consult!
Thanks so much for your reply!
This resonates so much. Everything you said is identical to my journey. I also completed a year of Evenityand my scores improved significantly, very similar numbers to you. I started Prolia and my provider wants me to stop after two injections and get a Reclast infusion. Infusions scare me so here we go again. I really don’t want to be on medication for the rest of my life And I’m tempted to stop everything or take a holiday. However, I am told that I will revert back. I really don’t like what I’ve researched about bisphosphonates. I wish I could go back on Evenity but insurance won’t cover it again. What have you been told abt Reclast and would you get an infusion? I feel like my provider keeps telling me I can go on a drug holiday after the next thing and then the next thing comes along and she says you need something else. Part of me feels like physicians are just pushing the meds. What are your thoughts about all of this?
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1 ReactionPlease don't just stop Prolia and take a holiday. You don't want to lose what you've gained.
I know what you're read about bisphosphonates. It does sound scary, but I believe you'd have to be on them for a few years to have those risks. I think you'd be OK if you just took them for a couple of years. Then, maybe you can do a drug holiday and just get monitored with blood tests and an annual DEXA.
The goal is to get to a point where you don't have to worry too much about fractures. Whether that is osteopenia, or mild osteoporosis, the goal is to not fracture. Dr. Keith McCormick has a -3.3 spine. He manages it with nutrition and exercise so that his bones are strong. I asked him about this, and he said "I don't care if I have osteoporosis. I only care if I fracture."
I just discussed Reclast today with my endo. I have to choose between Reclast and Fosamax for post-Tymlos. I did express my concern about a Reclast infusion. He said that a number of people report flu-like symptoms, and a few people have longer-lasting side effects; it's not common, but it does happen! You've seen enough stories on this forum. He pointed out that Reclast is a potent drug; after all, you're getting a year's worth of medication in one dose. I will not be taking it. I can get away with Fosamax.
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3 ReactionsIf the goal of taking ReClast is to preserve gain from an anabolic, and the doctor takes his/her oath to "do no harm" seriously, I do not understand why doctors resist ordering lower dosage. There is data showing that even 1 mg might provide the same protection as 5 mg. More frequent tests for bone turnover markers might be needed to check if the lower dosage is actually working for a particular person. WindyShores doctor suggested 1 mg infusions to protect her kidneys.
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1 ReactionIn my case, I originally thought I could improve my scores without medication. However after discussing with my doctor I finally realized that I was already doing everything I could: a great diet, heavy cardio weights, running, yoga, and bio identical hormones. So I started Evenity and am now on Prolia. I will have to take medication the rest of my life. My doctor has patients that have been on Prolia for 12-14 yrs with no problems. I thought I could take a medication holiday once my scores improve but my scores will begin to drop (and drop quickly with stopping Prolia), so I don’t plan on stopping. My sister in law sees an endocrinologist. Her experience has been different. She was put on Fosomax for 5 yrs but she stopped it after 4. Initially her scores improved and she took nothing else. When she found out about me having OP, she decided to have another Dexa and she had dropped significantly to -3.5! Her doctor restarted her on Fosomax. A coworker of my husband’s was on Fosomax, showed improvement, finished the 5 yrs, then stopped meds, and ended right back where she started. She then tried Tymlos after a lot of insurance issues and did not have much improvement after 2 yrs. Now she’s on Evenity. The way it was explained to me was that if I stop meds, I will lose my gains. I don’t really see the point. So far Prolia is covered 100% by my Medicare (A,B, and Gap plan) and I don’t have any issues with it. So I will keep going.
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1 Reactionhello, do you know about the follow up to prolia for locking in the bone build up ? that is if want to get off it after a point? or are you prepared to take it for life and discontinuing is supposed to cause rebound bone loss?
I too have severe osteoporosis 3.5 and i'm scared to start prolia