Evenity Side Effects

Thank you for sharing! I had severe, neurological side effects after an immunization, so this information helps my decision making immensely. Seems, if and when, I start bone drug, it will be Tymlos, which as you’ve taught us can be dialed up/down, and will continue on hormones that I wish I had started long ago. I so hope you start improving! 🙏🤗🤞❤️

I was on Evenity for 6 months when I decided to discontinue. I experienced pins and needle sensations that primarily in the upper arms and lower scalp. Subsequent doses only increased side effects of fatigue, brain fog headaches and random muscle spasms. I also had a significant increase in blood pressure that spiked about 4 days after the injection. I also started to have nerve pain in my fingertips. I do feel there may be a neurolgical component to this medication that has not been addressed in the research. Evenity does build bone, but at what cost?

@me49 yes research was focused on cardiovascular effects mainly. "Pins and needles" and "paresthesias" show up on side effect lists along with change in mental status, confusion, muscle spasms and others.

I am PM'ing you.

I was just told I need to start Evenity . I am so scared since I have neuropathy in feet from chemo ( finished in Dec of 22) , severe joint pain ( whole body ) from the hormone blocker, and am never ending headache .. I can’t imagine yet another side effect .

@donlynn I wonder why your docs are choosing to prescribe Evenity. Have you discussed this choice with them?

Usually those of us doing aromatase inhibitors for cancer are put on a bisphosphonate, often Reclast. Have you been on that? If your DEXA scores are worrisome, perhaps the docs want a bone builder. You could try Tymlos, which helped me a lot and side effects were manageable because the daily shots have an adjustable pen and you can start with a low dose and move up to let your body get used to it. (Try full dose first though.)

You could try Evenity once. Evenity is two shots and after my first time, I declined the second shot and only had one to see if I could reduce side effects.

I also have a history, in my case, of paresthesias, facial numbness and so on but Evenity did introduce some new symptoms. I hope you can talk to your doctor about your situation or even call Amgen.

I hear you about side effects over time. I did years letrozole for cancer, two years of Tymlos and 3 months so far of Evenity, then it will be Reclast. It's hard.

I have osteopenia and mild osteoarthritis. My Primary Care doctor recommended I start Prolia for the last few years, but my dentist was very opposed so I waited. In July I fell in my "Balance" exercise class resulting in 3 pelvic fractures. After some healing, I decided it was time for Prolia. However, after my visit with the rheumatologist she said I qualified for Evenity injections because of the fractures. I have completed 5 injections with no significant side effects, just normal soreness from any injection. After 1 year of injections she recommends Prolia.
My dentist is still opposed. I'm keeping very good dental hygiene practices hoping I will avoid any invasive dental work.

My doctors use Reclast after Evenity. Amgen makes both Evenity and Prolia so their website suggests Prolia. But if you do Prolia, you will have to do Reclast anyway to deal with the strong rebound when Prolia is stopped. My doctors don't use Prolia unless they absolutely have to because of the rebound.

I was told the exceptions might be those who cannot tolerate a bisphosphonate at all, and those who are old enough that stopping Prolia isn't an issue!

Hi Windyshores I’m back again After writing saying because of previous radiation for breast cancer, tia, AI, etc endocrinologist said Reclast was my only real choice .. I met with his APRN to go over all my test results. She said I could do Tymlos for 18 months , maybe 2 years and then switch to Reclast.
I know that’s sort of what you did
would you do that again? or go right to Reclast? Thanks for giving your opinion. Jas

@sessioja the info on Forteo (similar to Tymlos) after radiation seems to be mixed
https://pubmed.ncbi.nlm.nih.gov/34608566/
https://www.inspire.com/groups/bone-health-and-osteoporosis/discussion/anyone-on-forteo-after-radiation-treatment/
Best one: https://medical.lilly.com/us/products/assets/vaultpdf/en/3e6743360b192125aa079425c175a2279fe0f114526df3388f4134f290b7d592/can-patients-with-a-history-of-radiation-therapy-use-forteo-teriparatide-injection Read this one and give to doc?!!!

You might need more information on your radiation therapy but it does look like there is an increased risk from these drugs (Forteo and Tymlos) if the ribs or sternum were irradiated.

Are you currently on an aromatase inhibitor? Remind me why you are not taking Reclast? I don't think there is much data on Evenity and wonder if there are ongoing studies on any risk with Evenity after radiation.

Are your DEXA scores severe and needing quick rescue? Evenity or Tymlos can give excellent gains. I did aromatase inhibitor with NO meds (! doc wouldn't prescribe Reclast due to afib). I did Tymlos to catch up and had huge gains. Now trying Evenity and then finally will do Reclast.

Reclast is thought to have a preventative benefit in terms of cancer spread to the bones and Reclast or the other form of zoledronic acid, Zometa, are used for stage 4 in the bones.

It would seem from a quick read that your providers should look at the details of your radiation and whether it hit bone, but ask your doc!

I looked again at this study:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8085670/
Scroll down for a comparison of Evenity effects after Forteo, Prolia or a Bisphosphonate- or as a first treatment. The results for Evenity after Forteo are very positive. The hip improvement at 7.5% at 12 months is better than the 5.9% for those who have never taken a med before.

I have been posting about bone growth being greatest in the first 6 months of Evenity but this shows strong improvement in the second 6 months, though no doubt through anti-resorptive action.

Separately. a bisphosphonate alone in one study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9978276/ raises the hip 1.78% after 3 years according to another article. (spine 6.79%, femur neck 3.14). This makes me want to persevere with Evenity but it is difficult! I need to double check those bisphosphonate numbers elsewhere for shorter durations.