Evenity worked for me: Why I chose medication for osteoporosis

These are great points to underline for members dealing with both osteopenia and osteoporosis, @monkhhi. I appreciate your taking the time to share your decision-making process and criteria you used as your decisions about treatment evolved.

A big takeaway that I read in your message is the importance of monitoring bone density. Typically the early stages of bone loss don't show symptoms. So, whatever approach or combination of treatments - exercise, supplements, diet and medication - monitoring is essential to making adjustments to one's treatment choices as necessary.

Luckily, and sometimes confusingly, there are many different medications available to help when lifestyle changes alone are no longer enough.

For those of you considering treatment, this Mayo article helps make sense of the different medications available and how each class of drug works. It can be helpful to read it to prepare for a discussion with your provider.

- Osteoporosis treatment: Medications can help https://www.mayoclinic.org/diseases-conditions/osteoporosis/in-depth/osteoporosis-treatment/art-20046869

The article also notes that one shouldn't rely entirely on medicines as the only treatment for osteoporosis. Exercise, good nutrition, limiting alcohol and quitting smoking are also important. Here's more info from Mayo Clinic.

- Mayo Clinic Q and A: Osteoporosis and a bone-healthy diet https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-osteoporosis-and-a-bone-healthy-diet/

Coming back to you @monkhhi, what is one tip you would offer members who have just learned they have osteopenia or osteoporosis? What do you wish you had known?

One tip I would give is to educate yourself as much as possible about the lifestyle changes, disease process, and medications. My mistake was thinking that I could improve my Dexa naturally by doing more of what I was already doing. My second mistake was thinking that if I had to take medication, I would only need it to get my score up, then I could stop. Osteoporosis is a chronic condition and once you get as low as I did (-3.4), I will need to be on something the rest of my life.

I was also terrified of the side effects of Evenity, specifically heart attack, stroke, and atypical femur fx. I am a runner and couldn’t even imagine my femurs breaking. So I pulled up the actual clinical trials info. I don’t remember the exact #s, but it was something like 7000 total pts, 3500 took the med, 3500 had a placebo. There were about 4 heart attacks in the group that took the med, but also 4 that didn’t take the med. Any atypical result has to be reported, but you can’t really conclude that the med caused the heart attack if the same # who didn’t take the med had them too. As a precaution, your provider won’t prescribe Evenity if you have a history of heart attack or stroke. Just to be safe.

I will also say beware of Prolia, I am one of the multiple spinal fractures women (3 in 5 months this year) after having stopped Prolia and gone directly onto a biphosphenate. I am in Tymlos now to try to get some bone recovery.

@jennirdh I'm so sorry this happened to you. Could you give us some details please. Like which bisphosphonate did you use. Do you know how much bone you lost? Any other relevant details so others can be warned of this?
Thank you

More details that might help further outline what happened to me, probably the most striking is the CTX number, from 10/23 to 9/24 it went from 79 to 613! That was a year off Prolia ( last injection 4/23 and started ibandronate 150 mg in October 2023. Monthly dose. Dexa 10/23 still showed osteopenia, but not worse. So somehow in the span of 8-9 months I had a huge loss. Next dexa is this Monday, and I’m having an Echolight (ultrasound) done in January, which I want to do and will pay out of pocket for. I had no other changes to meds or anything in that time, in fact was exercising more than I had in years. I do have a family history of osteoporosis, my mother developed it early due to early menopause ( she had no HRT either) and had had several fractures before she passed away. So I am praying that Tymlos helps me and gives me time to research what to do after that. I need a new endocrinologist badly, it’s so hard to find one that specializes in osteoporosis!
As far as the Tymlos goes, ppl on this site have helped me by saying they take their shot in the morning (which is TERRIFIC for me) and I got up to the full 8 clicks within 5 weeks. No problem doing it in the mornings, I get busy and don’t notice if my heart beat is a little faster for a while.

I had my first Reclast infusion yesterday. It's been almost 30 hours since the infusion and I haven't had any symptoms or after effects. Nothing. If I didn't know it was Reclast in the infusion I would have thought it was just saline. The infusion was over a 30 minute time period. Prior to Reclast I did 12 months of Evenity injections. The only side effect for the injections was soreness at the injection sites which disappeared within a day.

Here's the issue for me. My endocrinologist told me last year that I had done everything possible to maintain bone density. But the effects of pelvic radiation therapy for a recurrence of endometrial cancer in 2021 and then a sacral fracture in 2022 which is a type of stress fracture due to radiation therapy put me in another place altogether. My mother had osteoporosis and was in pain due to stress fractures by the time she was my age (I'm 72 years old). She was frail. So I have a hereditary risk and the pelvic radiation therapy while necessary put me at risk too. So, I followed my endocrinologist's advice when he recommended Evenity to build bone and then Reclast to "lock in the gains". My bone density scan on November 19 after the 12 months of Evenity showed a 6% significant increase in my right femur and a 4% (nonsignificant but an increase nonetheless) in my lumbar spine. I'm no longer in the osteoporosis range. My diagnosis is now mild osteopenia. I am hoping that the Reclast infusion did indeed lock in those gains. I have continued with a calcium-rich diet, take 1000iu of vitamin D every day and exercise with both walking and strength training.

I'm doing everything I can to maintain my good health. And at my last cancer surveillance appointment on November 19 there was no evidence of disease.

Wow! Congratulations on your improved bone density and your awesome surveillance results! Lots of good news.

@jennirdh Again so sorry all that happened. The medical world needs to get on top of this. It shouldn't be happening. With your ctx going up that much and with ibandronate being the med you were given the fractures you experienced are not surprising.

As best I can remember and verify in a few minutes of searching ibandronate is pretty similar in power to alendronate. Both are not safe bets for transitioning off of Prolia.
If your ctx had been tracked monthly and you had seen your ctx skyrocket you could have switched to Reclast immediately. That might have prevented your fractures. But there is perhaps no point in using anything other than Reclast to follow Prolia if you have been on Prolia for more than 1-2 injections? And still with Reclast I think we should be doing monthly ctx tests to see if it is stopping the Prolia rebound.

So I have a question...is this Evenity a lot different than Fosomax and Bonita? I have refused to take those everytime my doctor recommends them because of the horrible side effects which includes FRACTURES! I obviously haven't done my research on Evenity but I will. Thank you for sharing your experience. I will definitely check this out.....but please tell me if you know if the Evenity is a completely different type of osteoporosis treatment than those others.

Hi, @catdogcarrie This video by Michael Lavacot may be helpful to you. He provides a nice introduction to the different osteoporosis medications. https://youtu.be/Z4uXAsnhSaA