1. < Osteoporosis & Bone Health

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.

leeosteo | @leeosteo | Aug 31, 2023
In reply to @gretch19 "If you don't mind my asking, what medication did he recommend? What was the follow up." + (show)
@gretch19

If you don't mind my asking, what medication did he recommend? What was the follow up.

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Forteo was the medication. He suggested Alendronate for 1 yr as follow up med.... since I had taken Alendronate prior and had no issues with it. My endo is recommending Reclast, however, that's two years away. I'll worry about that later.

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gretch19 | @gretch19 | Aug 31, 2023
In reply to @lucychristine46 "How do you get sucess from one’s insurance company to pay for a prescribed injection ...." + (show)
@lucychristine46

How do you get sucess from one’s insurance company to pay for a prescribed injection . How is your osteoporosis currently

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I went to 2 different endocrinologists who couldn't get it approved by my insurance. I then returned to my internist who recommended an orthopedic practice who got it approved in a day. I think it is because they pre-buy it and have it on hand. If you can find a practice that already has the medication, it may get approved.

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lucychristine46 | @lucychristine46 | Aug 31, 2023

That is very helpful.TY

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kristie2 | @kristie2 | Aug 31, 2023
In reply to @lucychristine46 "What are the oral meds that you have mentioned . I am just beginning to educate..." + (show)
@lucychristine46

What are the oral meds that you have mentioned .

I am just beginning to educate myself on osteoporosis treatment . I am afraid . My osteoporosis is in my lower lumbar and the worse spot is -3.7

Thank you for your guidance

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The oral meds are Antiresorptive and there are many. They are Bisphosphonates that only inhibit bone resorption. With your score being what it is I would go with the Anabolic ones which builds up the bone along with inhibits bone resorption. The Evenity is the one that I started and it’s an injection once a month. Then there is Forteo and Tymlos. The oral Antiresorptive meds are a lot to choose from and there are also injections and IV Therapy. It’s a lot to take in.
If you haven’t done so yet I would buy the book by McCormick ( Great Bones).

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kristie2 | @kristie2 | Aug 31, 2023
In reply to @leeosteo "gretch19, my discussion with Dr McCormick was beneficial. I found him to be personable and easy..." + (show)
@leeosteo

gretch19, my discussion with Dr McCormick was beneficial. I found him to be personable and easy to talk with. For me, I was looking for his guidance on the right medication. He's scientific in his approach and suggested a few tests to confirm what he thought was the right med. He also caught a few things that my PCP did not catch. I later met with an endocrinologist who recommended the same med as Dr McCormick.

Of all the doctors I met with, he was the most familiar with the various medications and he should be able to help you come up with a post treatment plan. Don't be surprised if he suggests another osteoporosis med as follow on to Evenity. These are strong drugs and need to be followed with the appropriate osteo med to lock in your gains. Add to your list of questions... what can you do now, in conjunction with Evenity and after, to holistically to support your bones.

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Would you mind sharing with us the medication that was agreed upon ?

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njhornung | @normahorn | Aug 31, 2023

For fun, I looked up the percentage of our bodies that are bones. The rule of thumb is 15%. So for a 100 lb person, that would be 15 lb. For a 150 lb person, there would by 22.5 lb of bones, or 50% more. Yet osteoporosis medication is not given by weight. Has any of the "experts" explained what happens if a person receives more than needed.

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maz | @maz | Sep 1, 2023

How often is Evenity shots given & how long is the the series ?

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1 reply
gretch19 | @gretch19 | Sep 1, 2023
In reply to @maz "How often is Evenity shots given & how long is the the series ?" + (show)
@maz

How often is Evenity shots given & how long is the the series ?

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Once a month for 1 year

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madeleine40 | @madeleine40 | Sep 1, 2023
In reply to @contentandwell "@erikas I have not yet been on any osteoporosis drugs but I expect to start on..." + (show)
@contentandwell

@erikas I have not yet been on any osteoporosis drugs but I expect to start on Tymlos within a few days.

@sarahw02 I hope your problems from Evinity will resolve quickly, I wish I could say something helpful.
JK

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Hi JK
I was just prescribed Tymlos 2 days ago. I am not eager to start as I am not done with my research and I would appreciate any info/feedback from you knowing everyone’s case is different.
Why was Tymlos recommended to you?
Has your bone density improved?
Do you to take another treatment afterwards?
Any side effects?
Thank you for any information you might share.

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1 reply
dianestanley | @dianestanley | Sep 5, 2023
In reply to @dianestanley "I just had my sixth shot of Evenity. After the shot, I usually get a little..." + (show)
@dianestanley

I just had my sixth shot of Evenity. After the shot, I usually get a little tired then by bedtime, I sleep pretty good. I am usually tired the week after but then feel good. I hope to be able to complete all 12 shots and then I will have that scan done again for bone density. Hopefully, the surgeon can do my surgery to fix my issue after I fell in my bathroom. I fell on my knees and broke my back bones.

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Candy: I had finished all of my Evenity shots in July 2023. When I had started out I had a -2.9 in my spine. I can't get another scan until April but my spine surgeon felt that my bones were as good as they will probably get after treatment with Evenity so he has scheduled my infusion surgery for Oct 31 and Nov 1st. I am 70 now so that is my only concern. But, I feel blessed that I am getting to have surgery. I can't stand over 4 or 5 mins at a time after two years of my injury.

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