Stopping Evenity Early

Posted by melanie1 @melanie1, Sep 17, 2022

I decided to stop Evenity after seven treatments because I seemed to develop increased symptoms of osteoarthritis in knees and hands while on it, in addition to generalized stiffness and joint pain. Has anyone experienced this or stopped Evenity for other reasons before completing 12 treatments?

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@rn40

I did a lot of research, and spoke to the reps at Amgen several times. I started the treatment due to the -3.2 T, and -2,9 t scores in my hips. I did had osteopenia in my spine. My hips showed only a slight improvement, -3.0 and -2.8 respectively, with the greatest (9%) improvement in my spine. I am having joint pain, back pain headaches, and palpitations still, after my last treatment at the beginning of December. My research into the prolia and reclast convinced me that I did not want to take either of these medications, especially considering the minimal improvement in my hips. I am planning to include a rebounder as a daily exercise, in addition to the yoga class I take, and I am researching OsteoStrong as alternatives to medication, along with bone maximizer., vitamin D and magnesium supplements. Thanks for your concern

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i also finished 12 months of evenity and had great gains in spine. -3.1 to -2.5 and gains in femur -3.0 to -2.7 hip. Reluctantly am on alendronate for 2 months and doing okay but also wonder how long I need to be on and why. My docs said I will also continue with gains on alendronate. I don’t want to run into jaw issues, why take longer than I need to? Is everyone the same as far as how long needed to lock in gains? Shouldn’t this be tailored to the individual based on bone turnover markers? Is anyone researching this? Great discussions here on this site. I am going to do a CTX after 3 months of alendronate to see if it’s gone down from 531 and if it is ask why can’t I stop alendronate?? and just monitor. I’m pretty sure the answer will be no because they want to continue with BMD gains but I don’t want too much additional risk with jaw/femur issues.
I have added a weighted vest to my walking regime https://www.nykweightvest.com/. This vest is perfect for winter walking. You can adjust the weights easily and it fits comfortably under a jacket.
And i’m thinking about a rebounder. Anyone have any suggestions for a good one?

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Thanks for your comments. I did not have a 9% gain in my hips, that was in my spine, where I started out with osteopenia. My hips, which were osteoporotic, got about a 3% gain. I know that Amgen makes both medications, and I researched prolia quite extensively. I didn’t want to start it, because of the increase in vertebral fractures when it is stopped, and after researching Reclast, I knew I didn’t want to take that. I am unfamiliar with the Doctor you mentioned, but will look him up. Any resource is appreciated. I was disappointed in my doctor, as she could not answer my questions, and I seemed to know more about the drugs than she did.

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Also, I did ask my doctor if I could take bisphosphanates instead of prolia/reclast, and her response was that was not the protocol, and offered no further discussion

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@rn40 McCormick is a chiropractor who is an expert on osteoporosis. Sorry about mixing up your results!

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Where is Dr. McCormick.? Do you have any contact info?

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@rn40

Where is Dr. McCormick.? Do you have any contact info?

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Just google him!

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@gretch19

I am reading McCormick's 2009 book called "The Whole-Body Approach to Osteoporosis: How to Improve Bone Strength and Reduce Your Fracture Risk". While it is excellent and thorough, it focuses on nutrition and testing for deficiencies and how to correct. I had hoped to correct my low bone density through nutrition and supplements, but evidently never fully understood what was involved and didn't go through all the tests required (almost all of which are not done by traditional doctors nor covered by insurance). Now that my bone density has worsened significantly, I feel that I need to be more aggressive. That said, in McCormick's earlier book he doesn't advocate treating with medicine. In fact, he says when he was diagnosed with severe osteoporosis and doctors wanted to put him on meds, he refused. So what I'd like to know is in "Good Bones", is he advocating for meds or is his approach still more holistic? Does he discuss Evenity, Prolia, etc?

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@gretach19 I am reading a post from July 29 where you write that Dr. McCormick refused meds. This is not true. He freely tells patients that he was on meds, and when appropriate, suggests them for patients as well. His more recent book "Great Bones" has a lot of detail on meds.

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@windyshores

@gretach19 I am reading a post from July 29 where you write that Dr. McCormick refused meds. This is not true. He freely tells patients that he was on meds, and when appropriate, suggests them for patients as well. His more recent book "Great Bones" has a lot of detail on meds.

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That is interesting that he WAS on meds. What about now? It seems to me that once we start on meds, we will be on them for the rest of our lives.

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I had my first Evenity injections this past Tuesday. I had already done 2 years of Tymlos with excellent gains but my femur neck is still -3.6.

In the office, immediately after the injections, I had a weird and severe chest pressure/tightness, right where my diaphragm ends, kind of burning.

For the next few days, this continued though getting less over time, also pins and needles all over, first hands and then it spread. Anxiety (I do not have an anxiety issue) and palpitations. By day 4 much of this was substantially better.

I had decided absolutely not to do another set of injections but now on day five, I am on the fence. I read that "exposure" is greater for lower weights and I weigh 103. My doc is checking on lowering the dose and I will call Amgen. I also report these things at MedWatch. My doc said he had never heard of these side effects/adverse reactions but they are actually listed on the Evenity website, though rare. I just got over a bad case of COVID and have an autoimmune disease so maybe my immune system is out of whack!

Most people do fine so I hesitated to post for fear of scaring others. I have several spinal fractures and am motivated.

I still have to do Reclast and doc will do a 20% dose first due to kidneys and afib. I may just buy hip pads instead of doing Evenity!

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@normahorn

That is interesting that he WAS on meds. What about now? It seems to me that once we start on meds, we will be on them for the rest of our lives.

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@njhornung I don't expect to be on meds continuously for the rest of my life. I believe that McCormick (who was young and a triathalon athlete, and still is) used more holistic methods after meds. I have been told that once I "lock in" gains with Reclast, I can probably take a med break, even a long one, with monitoring. At that point I will try more of McCormick's "whole body approaches" too. With Prolia, things are more complicated.

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