My Experience on Evenity for Treating Osteoporosis

I had two shots on 12/26 and on 2/1 I declined the second. I believe the full dose is too much for some of us: it is based on a 150 pound person. Evenity inhibits sclerostin and sclerostin is present throughout the body. Studies found that those with osteoarthritis and rheumatoid arthritis have low levels of sclerostin. It is also important in cartilage repair. Dr. McCormick told me that 40% of his patients experience joint pain.

Even with a half dose, after two treatments, I am having joint and bone pain and burning pins and needles all over. My upper chest hurts: ribs? muscle?

Evenity's action peaks at days 2-7 with the average 5 days. Its half life is 12.8 days after 3 sets of injections, a long half life (though nowhere near that of Reclast).

I have reduced doses of every med I take, including Tymlos and future Reclast. I am resisting the standardized dose of Evenity but technically the treatment should be 3mg/kg and one shot is 2mg/kg. That means 10% effectiveness versus 16% for the full dose. For me, the full dose would be 1 1/3 shots! I wish I could give it to myself!

Is anyone else having complicated, strange dreams? This effect on my brain is concerning more than anything else.

Most people do fine with full dose and I am exceptionally sensitive to all meds, and have several health conditions including lupus. I don't want to discourage others from trying Evenity or any other medication if it is needed. I have suffered fractures and side effects that are tolerable are not an obstacle for me, only side effects that are absolutely not tolerable. Fractures are disabling and painful and I will suffer a lot to avoid more.

I’m so sorry @windyshores,windyshores I haven’t tried Evenity, but understand being sensitive to drugs. I hope your pain improves quickly, and the brain impact. Fractures are terrible, but this sounds maybe worse.

Hi I’ve posted previously of the same side effects you mention that started after 6 months of injections. Never had an ache or pain prior to Evenity. Stopped after 11 mos as it was hard to move. Took 6-7 months to go away but Fosomax made effects come back, switched to Actonel 1x a month and only have mild aching at times. All meds seem to have some side effect but I am 67 and very active and hope to stay that way! Do know most bone building from Evenity takes place in first 6 mos. I would have stopped sooner had I known that. I don’t know how to link you to my previous comments. Had great improvement in my spine so I guess now it was worth it!

Hi Laura: I finished my first year of Reclast following stopping Evenity after 9 months due to ever increasing joint pain in my right hand from month 5 to 9. Reclast unfortunately increased the pain and it spread to my left hand. Now I have decided to do Actonel but the once a week because the dosage is lower and hopefully won't cause any or less problems. When you said you had only mild aching with the once a month dosage did you have or are still having the aching with each dose; has the aching decreased with continued usage? As you can imagine I am very reluctant to take anything but realistically that is not a good idea. My hand pain is getting better but not back to anything near normal. But I can open jars now with a little help; so a plus. I'm just concerned that the hand pain will get worse with Actonel and I'll be back to where I was a 8 months ago.
Just an FYI after 9 months of Evenity my spine went from -3.6 to -3.0; the total hip didn't change -1.4; but the trabicular bone score (probably didn't spell that right) went from a 1.00 bad to 1.355 normal.

Hello Ann, I am getting mild aching from the Actonel still and it seems to be the most noticeable about 5-6 days after I take it and then it is less. I keep pretty busy so I think I don't think about it and just get used to it. I sure to hope though that it is keeping my numbers stable as I don't have a DEXA until Fall 2025. I just keep trying to be diligent about exercise, diet and supplements! Hope Actonel weekly helps you. I wonder if that would be better for me but it is so convenient to take it once a month. Thank you for mentioning that. I might be worth a try for a month or two. I had zero aches or pain before Evenity. Best to you!

Thanks for getting back so quickly. I hadn't realized until this morning how anxious I was about this. I've also developed peripheral neuropathy probably not related to Evenity or Reclast but I came across some evidence that Actonel may, may cause peripheral neuropathy (very, very rare). So I'm dealing with being concerned Actonel could make the PN worse. I so hate having to deal with this.

Hello @californiakaren! Thank you so much for sharing. It's much appreciated. Thanks also for sharing your exercise routine and about Dr. Fishman's 12 poses for osteoporosis.
I'm 60 and my T-scores are really unchanged from 2018. Currently:
PA LUMBAR SPINE(L1 - L4): -3.4
LEFT TOTAL HIP: -2.5
LEFT FEMORAL NECK: -2.6
LEFT 1/3 DISTAL RADIUS: -4.9

In 2018 my PCP prescribed one Reclast infusion and after she retired, my new PCP preferred to have Rheumatology manage treatment. I haven't asked but I'm guessing that the low bone density is related to a small body frame and a diagnosis of rheumatoid arthritis over 35 years ago (when I was 26). I have never broken a bone and feel that my bones are quite strong, despite the T-scores. I do think there are other, better measures of bone density that are not yet standard for osteoporosis diagnosis. And from reading previous comments, it seems that bones can break with better scores than mine.

I was initially in agreement about treatment with Evenity, until my insurer (GEHA (Government Employee Health Association), which is administered by Aetna), declined it and tried to push Tymlos (which was my doctor's second choice). Apparently, Evenity is not on their formulary, though the costs are similar. I wasn't happy with my health insurer trying to be my doctor.

Then I began reading and researching about the pros and cons of these meds and the bisphosphonates (and HRT) and, the possibility that I could run out of options before I'm 70 (after dealing with whatever side effects arise during treatment) was not ideal. As my doc said, "We can treat with anabolic meds for 1-2 years, then use bisphosphonates for a few years afterwards to maintain the improvements, and then we'll wait and see." Hmmm!

I really appreciate having this site to mull over others' experiences before making a decision about following this course of treatment and when to begin. Thanks again for sharing. I hope you will continue to post updates as you progress through treatment.

Sorry if I am repeating myself , but anyone else having memory issues on Evenity, or strange dreams? My recent memories could be from COVID. Listed side effects include "confusion" and "mental changes." I don't mind any of the other side effects (joint pain, spasms, burning) but memory is important to me.