Trying to decide about Evenity

I discontinued Tymlos in mid- to late July and had my first Evenity injection pretty quickly thereafter - I think around August 10. I did push for the appointment for the Evenity injections to begin within 30 days in the event Tymlos had worked for the 9-1/2 months I used it to prevent losing any gains I may have made. Because of the circumstances, I was able to schedule my appointments every four weeks, which allowed me to finish with Evenity in just a little less than a year.

Cheers!

Hi @mdm30

I thought I had replied to your question earlier only to find that I can't locate my post.

I didn't have a wait period, per se, because I pretty much pushed to get the first Evenity injection within a month after the end of my Tymlos odyssey; I didn't want to take the chance that I would lose gains. To that end, when I phoned for the appointment, I made sure to tell the scheduler that the doc said I shouldn't wait more than 30 days. There's no reason for not being able to schedule an appointment when the visit takes only about 10 minutes with a nurse administering the medication. The first dose takes about 15 extra minutes - the staff monitors you in case there is an adverse reaction.

I stopped Tymlos in mid- to late July and had my first Evenity injection in the first or second week in August, 2023. With careful planning, I finished with my last dose of Evenity in late June, 2024.

My doc told me the wait time should be no longer than 30 days between bone builders, while his CRNP told me that I could wait up to two months and there weren't really any protocols in place . . . hmmmm?

I hope this helps!! Cheers!

What were your side effects on Tymolos?

You need to research that medication very very carefully. It has a black box warning for heart attack, and strokes!

Hi @missey

One of the reasons my rheumatologist didn't wish to prescribe Evenity to me was because of those very warnings. Once I had checked "Dr. Google" to get a bit more information, I had a chat with my cardiologist, asking him to give me his opinion on the matter; he had no issue with me going the Evenity route.

I have history of heart attacks and strokes in my family and a minor heart issue myself, but based on what the cardiologist said, was not worried about taking Evenity in my particular situation.

There is so much conflicting, old, and just plain incorrect information swirling around us, especially on the internet. Always question and always seek a professional opinion to discuss all of your fears and anxieties. Advocate for yourself!!

Cheers!

Any medication that has a black box warning on it should be seriously reconsidered for use. My Endocrinologist didn’t even know there was one on this medication until I pointed it out and then she tried to convince me to take it anyway, I would rather be on another their medication and alive than even taken the chance I was going to have a stroke or die because of it. I don’t care how rare this occurrence might Happen I am not going to be one of those statistics

Hi @katgirl

Oh, gee, how much time do you have? In no particular order or severity, some of them 24/7: RAPID heart rate (120+), nausea (Ondansetron didn't help), bone pain in my butt and lower back that subsided after about 5-10 minutes post injection, ankle pain (felt like a broken ankle), chest and rib pain (couldn't take a full breath/felt like a heart attack), pain in my lower left side, s-e-v-e-r-e back pain (steroid-type injections did not help for the most part and can be anti-OP), excruciating pain at the tops of my shoulders and pains in my hips (subsequently diagnosed as sciatica - part of the whole compression fracture saga and relieved to a large degree by a chiropractor), weight gain in odd places, sleeplessness - likely due to not being able to get comfortable . . . and last but not least, recurring GERD likely from taking more acetaminophen and ibuprofen than I should have. My doctor knew about most of these adverse reactions in real time - so he wrote a script for physical therapy!!!!

Tymlos caused me to visit the ER twice, a pain specialist several times, a spine specialist, PCP for a physical and Lyme disease test, rheumatologist, physical therapy, extra visit to my cardiologist, and messages to docs and staff; all cost time and money with little to no relief.

I was a mess, physically and mentally, for most of the 9-1/2 months on Tymlos. Even if I had known about beginning the treatment with a lesser dose, I'm not sure I would've done that. My DEXA numbers post-Evenity are great, but because my rheumatologist would not order a DEXA before or after Tymlos, I don't know if I went through hell to get my gains or if Evenity is the hero.

Rest assured, not everyone has these reactions, as you can see from reading members' posts; I drew the short straw with Tymlos. I should've refused to continue Tymlos when the odd and constant issues began. If you visit the Tymlos website and look at the list of adverse reactions, some of them are ones that I reported . . . Oddly enough, one of my strengths is to advocate for myself - not sure what went wrong here.

Remember, you asked . . .!! 🙂 Whatever med you choose, don't be afraid to ask questions and speak up if something doesn't seem quite right. Cheers!!

If you read my post you can see that I completely agree with your stance and it is certainly within your rights to refuse a medication for any reason. Face it, many modern medications will help to manage, but not cure diseases and many come with calculated risks and a boatload of adverse reactions. We must decide what, if any, risk we're willing to take to add life to our years.

Bottom line: Choose your poison, and choose it carefully. I made an informed - and the right - decision for myself with Evenity, full well knowing the risks, and I can't unring that bell. I fished what I wished - excellent DEXA numbers post-Evenity. By the way, Tymlos initially had a black box warning, which has since been removed, for osteosarcoma risk.

Here's a funny story. In October, 2024, while attempting to navigate an extra high curb, my sneakers (darn rubber toe caps) caught the edge of the curb and threw me down on my left side, sprawling onto the sidewalk. I was able to jump right back up and after a quick assessment, started walking. The next morning, I figured I should go to the ER to make sure everything was still in place and working properly. X-ray results: Boxer's fracture in my left hand, but no frax in my hip or femur! So that's a big win for me. Don't know how that might have turned out if not for Tymlos and/or Evenity.

All the best! Cheers!