Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
Connect
This is how it was explained to me. There are basically 2 broad categories of medications. Antiresorptive (slow bone loss) and Anabolic (increase bone formation). Fosamax and Boniva are bisphosphonates which are antiresorptive. Evenity (an anabolic)is a little different as it has a dual effect. It assists bone formation and also slows bone loss.
-
Like -
Helpful -
Hug
1 Reaction@catdogcarrie Bonita and Fosamax are bisphosphonates and anti-resorptive. Forteo and Tymlos are anabolic and build new bone, via the parathyroid.
Evenity is both- anabolic at first and then more anti-resorptive. It inhibits sclerostin. People with low sclerostin have very thick bones. So researchers got the idea it could help osteoporosis. It was approved in 2019.
Fosamax and Bonita have a risk of atypical femur fracture and jaw necrosis but generally after 3-5 years and I have been told that happens mainly to cancer patients on high doses. But there are always exceptions. The thing is, without meds our risk of fracture is high, if our scores are bad.
I am curious if you are seeing an endocrinologist and if Forteo or Tymlos have ever been discussed. That said, many seem to be getting amazing results from Evenity. I did Tymlos, Evenity and now Reclast!
You are so right! I am a great example for why we should take control of our own healthcare, by that I mean research more, etc., which I did not do enough of… the monthly (or even every 3 months) ctx would have caught the slump sooner. There was a staff change (actually 2!) in NP’s at the doctor’s office during this time and no one person was following my progress. I have certainly learned a lot, the hard way! If any of my story helps other women to take more charge of their osteoporosis tx then I’m glad to help.
Thank you for sharing your experience. I just wanted to comment because I m one of those people that did have side effects with Evenity and was pulled off it after 3 infusions. I was then switched to Reclast. I have had 2 infusions, one year apart, and I now have been given a break until my next scan indicates that I should maybe have another. My numbers improved with the Reclast infusions. I really didn’t want to take any medication either, but when my numbers did not get better but worse I chose to take some medication. I just wanted to share because the choice to take medication is a difficult one, but in my case it was the right thing to do. I did not have the positive experience with Evenity that you had but I did with the Reclast. Everyone just monitor your body if you choose to take some medication, it’s not a one fits all.
-
Like -
Helpful -
Hug
4 ReactionsNo, I'm not seeing anyone. I am very scared to take those meds...because, if I'm not mistaken, once you start you can't stop or every gain is lost....Thank you for your kind responses and sharing your journey...
-
Like -
Helpful -
Hug
1 Reaction@catdogcarrie your posts make me worried that you are making decisions with false or insufficient information.
You are already losing bone density without meds and yes if you stop meds you lose bone, just as you are now. Reclast actually stays in bones a long time and people stop or take breaks all the time. Prolia is the only one with rebound that results in losing gains.
You are worse off without meds, than with, in other words. I am on this forum because I have 7 spinal fractures and am here to say they are painful, disabling, life-altering.
You need an endocrinologist. Many people take these meds with few or no side effects. There are ways to make them more tolerable. You CAN stop meds for a time, maybe even for a long time, with proper monitoring- after "lcoking in" gains with bisphosphonates. You are losing bone now!
-
Like -
Helpful -
Hug
4 Reactions@monkhhi, I appreciate your post and the manner in which you considered medications.
You mentioned that Evenity targets the lumbar spine. Do you (or does anyone) know which medication targets the hip?
Thanks again.
-
Like -
Helpful -
Hug
1 ReactionCan you provide more info on your experience with Evenity and why you had to stop taking it? Thanks.
When I was taking Evenity I would have issues with flushing like when having a hot flash. Also I would get facial tingling all around my jaw, and it hung around for a while.i talked to my endocrinologist who called the manufacturer of Evenity and they advised her to take me off it, apparently I wasn’t a good match for that drug. That was their words exactly .
-
Like -
Helpful -
Hug
2 Reactions