My Experience on Evenity for Treating Osteoporosis

Posted by arlene7 @arlene7, Jul 7, 2020

Thought I would share for those considering or on Evenity for osteoporosis:
Afer much research and discussions with my GP and Cardiologist, I have decided to start my treatment with Evenity injections. As with all drugs, there are many side effects. My biggest concerns were stroke and heart attack. However, considering that I do no have any history for either, for me personally, the benefits outweigh the risks. As my GP said to me, "if everyone only thought about the side effects of the drugs, no one would be taking them".

I had my first injections (subcutaneously in the back of each arm) on June 30th. The nurse that administered the injections discussed the drug in depth, along with all the possibilities that may occur. She also mentioned that for all the patients that she has seen, none has had any side effects.

The injections are once a month for only one year, so I'm hoping that this works well for me and I can improve my bone density, especially in my spine, where I need it the most.

My endocronologist has also prescribed Hydrochlorthiazide for my idiopathic hypocalcemia. I have an appointment with an allergist this month to confirm whether I still have an allergy to sulfa drugs, since this drug contains sulfa. Apart from this I take D3 orally and try to obtain additional calcium through foods not supplements. Trying to walk 3-4 times a week and will begin with a few weight bearing exercises.

My journey began September, 2019 when I was diagnosed with severe osteoporosis. After waiting to see three doctors, receiving three denials from insurance company for Evenity, which took several months, I am hopefully on my way for a favorful outcome.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Thank you Windyshores,
That is helpful. I did discuss with my dentist and she minimized the Evenity risk. Hard to know what the best course of action is.

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@normahorn

The saline flush of the IV contast line for a CT scan left me light headed. Something to be aware of that could happen to you.

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The saline flush is only 10 cc. I don't think that it could cause a problem.

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@windyshores

According to my endo doc and Keith McCormick's book "Great Bones" Prolia should be followed with Reclast. If you did Prolia then Evenity (and there are no studies on that apparently) you will still need Reclast according to those sources. If not, then there will be bone loss and increase in fracture risk.

I posted on another thread the detailed instructions for transitioning from Prolia to Reclast, which has to be timed properly using CTX blood tests. Too early and it may not work, and too late, the bone loss may have already occurred. The CTX should be every 4-6 weeks and when it rises, that is when the previous drug has worn off and time to do Reclast, which can last two years according to some studies. Usually it is done annually.

There is no info on timing with Evenity but a transition to Reclast (or Prolia) is needed to avoid a drop in bone density and increase in fracture risk.

Reclast "locks in" gains and we may be able to take med breaks.

McCormick and my docs say that if you go from Prolia to Forteo or Tymlos, those drugs aren't effective. Evenity is too new so transition from Prolia to Evenity is not covered in the book's info.

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I’m more than likely going off Evinity . Been 6 months . Should I go on Prolia or Reclast ? I have a meeting today . You seem to be well informed . Dr Keith sounds amazing . I do want to go to Dentist . If you need dental work . Usually they won’t do it on Reclast . Thank you

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@dreamjean1958

I’m more than likely going off Evinity . Been 6 months . Should I go on Prolia or Reclast ? I have a meeting today . You seem to be well informed . Dr Keith sounds amazing . I do want to go to Dentist . If you need dental work . Usually they won’t do it on Reclast . Thank you

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@dreamjean1958 One or two Reclast infusions may be fine with dental work. Maybe your endocrinologist can talk to to your dentist. Do you currently need an extraction or other procedure?

If you go on Prolia, it is hard to get off. For people who are 80, that may not be a problem. With Reclast we can stop without problems, and may be able to do 1 or 2 infusions and take a break. My docs won't use Prolia. If yours does, maybe ask about what the plan is when you want to get off. It has to be Reclast and the timing is very tricky.

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@ans

Sal462- Do not be dismayed, have you done any serious investigation as to your potential root causes of your osteoporosis?? There are many, and if you figure them out and can address them you could potentially improve your status. Check out Bone Coach , Kevin Ellis and his team, another person to try to get hooked up with is Margie Bissinger, she does a lot of podcasts related to just these very things. Earlier this year , late March into April , Margie Bissinger offered a free week long, and I mean week-7days- of experts in the field of osteoporosis from their own specialized vantage point. The symposium was titled -“More natural approaches to bone health and osteoporosis.” There were ~9 half hour to hour lectures offered each day . I learned so much and through it got acquainted with many of their names. They all gave their websites, offered resources for free information , etc. Just wonderful. So glad I tripped over that. It’s been a god send it terms of understanding and having a different perspective. Keep your eyes peeled because it was her 2nd symposium she had done for osteoporosis and I anticipate she’ll do a 3rd annual one next year!! Actually , some of her podcasts are from the same professionals that presented at the symposium. Keep working to figure this out!!! There’s still hope. But do realize that it’s so much easier to maintain density than to build it once it’s low especially the older you get.
Good luck to you and all on this site!!!!

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Thanks, just seeing all the comments I missed. I will look up Margie Bissinger. The thing w this Bone Coach is I keep getting these missives that if I don't sign up right away my "application" might be denied in the future. It's like so high pressure, puts me off.

I do want to look into some of those tests he mentions for other problems. Like everyone they did the celiac test but that's really it.

Thanks for your input.

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@windyshores

@sal462 I also had breast cancer. These meds can be a problem if you have metastasis or radiation to bone, but otherwise okay I believe. Lots of us breast cancer patients are taking them. I was more concerned about Prolia and cancer, which is probably unfounded, but it affects the immune system and I need a strong immune system if cancer comes back.

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Thanks. Just seeing your comment. You know the worst thing w/ having to worry about breast cancer recurrence too? In the back of your mind you know you shouldn't be having much dairy, but for the osteoporosis you HAVE to have dairy (at least, if your me, my stomach just could not take getting all my calcium, even via AlgaeCal which I've found is the easiest to take if I stop at 2 a day).

Thanks again. So glad I found this site.

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@sal462

Thanks. Just seeing your comment. You know the worst thing w/ having to worry about breast cancer recurrence too? In the back of your mind you know you shouldn't be having much dairy, but for the osteoporosis you HAVE to have dairy (at least, if your me, my stomach just could not take getting all my calcium, even via AlgaeCal which I've found is the easiest to take if I stop at 2 a day).

Thanks again. So glad I found this site.

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@sal462 I have a dairy allergy@ Can you handle Tums?

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@sal462

Thanks, just seeing all the comments I missed. I will look up Margie Bissinger. The thing w this Bone Coach is I keep getting these missives that if I don't sign up right away my "application" might be denied in the future. It's like so high pressure, puts me off.

I do want to look into some of those tests he mentions for other problems. Like everyone they did the celiac test but that's really it.

Thanks for your input.

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@sal462 - So frustrated as I had written a whole explanation of what and how I dealt with that situation and then all of a sudden the screen went to some survey about this Mayo Clinic site. I don’t have the time or patience now to redo the “comment”, but I will later. This is the second time this has happened to me and it’s SOOO frustrating. I’m not sure how or why that occurs .

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There a reason you get calcium through foods as opposed to supplements?

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@ans

Sal462- Do not be dismayed, have you done any serious investigation as to your potential root causes of your osteoporosis?? There are many, and if you figure them out and can address them you could potentially improve your status. Check out Bone Coach , Kevin Ellis and his team, another person to try to get hooked up with is Margie Bissinger, she does a lot of podcasts related to just these very things. Earlier this year , late March into April , Margie Bissinger offered a free week long, and I mean week-7days- of experts in the field of osteoporosis from their own specialized vantage point. The symposium was titled -“More natural approaches to bone health and osteoporosis.” There were ~9 half hour to hour lectures offered each day . I learned so much and through it got acquainted with many of their names. They all gave their websites, offered resources for free information , etc. Just wonderful. So glad I tripped over that. It’s been a god send it terms of understanding and having a different perspective. Keep your eyes peeled because it was her 2nd symposium she had done for osteoporosis and I anticipate she’ll do a 3rd annual one next year!! Actually , some of her podcasts are from the same professionals that presented at the symposium. Keep working to figure this out!!! There’s still hope. But do realize that it’s so much easier to maintain density than to build it once it’s low especially the older you get.
Good luck to you and all on this site!!!!

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Hi again. Just wanted to tell you a watched a Margie Bissinger YouTube video from I guess last spring and was really impressed. Said to my boyfriend maybe I should go see her ( I only live a couple of hours away). He of course doesn’t trust anything on internet. I don’t know why I think she could help me more than the Bone Coach thing.

Anyway thanks for leading me to that video.

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