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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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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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2 ReactionsHello @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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1 ReactionThank you for sharing this. I’m just beginning to take exercise and diet to a higher level.. I thought I was doing good, but my scores got worse my last DEX scan. I’ve been taking reclast which obviously isn’t working. I see a new Dr in a few weeks and am excited and hoping there is a new route- perhaps Evenity. So great you have had such good results.. like you my condition is hereditary/ with both my parents having osteoporosis/padgets disease. I look forward to hearing of your continued positive results, and hope I follow in those footsteps!!
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1 ReactionVERY good point, about folks with negative experience posting more!
I’m not even sure how to read my scores until I speak with my doctor. Endocrinologist is another great idea! Thank you for the tips!
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2 ReactionsThank you, Justin. Still osteopenia. Since I haven’t spoken with my doctor, I’m not 100% clear on the numbers’ meaning.
Good points also, about the wait before treatment. I will check out the posts you have mentioned. I did just get the Mayo Clinic on Osteoporosis book also.
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1 ReactionPlenty of great info online regarding understanding dexa and frac scores.
I am going to do the Echolight Scan that so many people have talked about, as it seems that it gathers more information on the bone and the integrity of the bone. I dont know if my insurance will cover this, but for me it is $240.00. I am then going to get with my doctor regarding this, and ask alot of questions. Ask what every option available is. I tend to be medication resistant so, my options seem limited. Ask questions, do research, talk with your doctor, pick peoples brains on here, and then make a decision, that is best for you.
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4 ReactionsThankyou! I am also very med-resistant!
I have much more to learn and will look into the Echolight Scan also.
When I speak with my doctor, I’ll take good notes, get her advice, but probably not make any decisions that day.
Appreciate your reply!
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2 ReactionsI 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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1 Reaction@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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