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.

windyshores | @windyshores | Dec 16, 2021
In reply to @heusty "Thank you for all the information. I’ve decided to start Evenity in January. I’m having Kyproplastic..." + (show)
@heusty

Thank you for all the information. I’ve decided to start Evenity in January. I’m having Kyproplastic surgery for 3 fractures in my back in January also. Will start Evenity after that.

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My doc said outcome with kyphoplasty is not different than if you don't have one. I have 3 new spinal fractures and declined the surgery. One, I am concerned about leakage of concrete into my lungs. Two, the concrete hardens and there is more risk of fracture in adjacent vertebrae. Other risks include infection, bleeding and nerve damage. My doc only does this surgery for relief of extreme pain, but the pain eases over the next months anyway. It is controversial in other words, but many people do have it done.

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1 reply
heusty | @heusty | Dec 17, 2021
In reply to @windyshores "My doc said outcome with kyphoplasty is not different than if you don't have one. I..." + (show)
@windyshores

My doc said outcome with kyphoplasty is not different than if you don't have one. I have 3 new spinal fractures and declined the surgery. One, I am concerned about leakage of concrete into my lungs. Two, the concrete hardens and there is more risk of fracture in adjacent vertebrae. Other risks include infection, bleeding and nerve damage. My doc only does this surgery for relief of extreme pain, but the pain eases over the next months anyway. It is controversial in other words, but many people do have it done.

Jump to this post

Thanks for the information. My pain level is tolerable with Tylenol for the most part, probably a 2-4 depending on what I do. So I’ve pretty much decided to think I’ll skip the Kyproplastic.

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1 reply
windyshores | @windyshores | Dec 17, 2021
In reply to @heusty "Thanks for the information. My pain level is tolerable with Tylenol for the most part, probably..." + (show)
@heusty

Thanks for the information. My pain level is tolerable with Tylenol for the most part, probably a 2-4 depending on what I do. So I’ve pretty much decided to think I’ll skip the Kyproplastic.

Jump to this post

I made the same decision! My pain was not tolerable for 3 months but then has steadily improved, proving what the doc said: we end up in the same place without kyphoplasty as with in terms of pain! Posture may suffer a bit but so far, even with 7 fractures, I am not hunched at all 🙂

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1 reply
karla1966 | @karla1966 | Dec 20, 2021

Hi , I'm a 55 yr old who has had multiple fractures in the past few yrs. Dx with osteoporosis with a DEX scan of -3.9 and was put on tymlos. From day one it caused a rapid heartbeat for about 5 minutes immediately following injection and after a few months I could feel my heartbeat in my kidneys and they ached/throbbed with every beat ...I stopped taking it at that time. This past June I was bending over struggling to put on a new pair of boots and blew out my L4 vertebre. I was started on Evenity in July . After 3 months I was still in terrible pain ...lower back and sciatica and decided to try Kyphoplasty even tho the Drs said it might not help ( this procedure was not that invasive or painful in my opinion) . I felt better for 2 days was standing and walking straighter and thought it had worked but on day 3 my pain was back. I've read through the comments here and noticed some similar ailments/possible side effects. I have always had pain in and around my hips and groin which I feel is worse now (makes me look like I walk like an 80 yr old too), all my joints ache the bigger the joint the more painful, and my feet every so often will become so cold like blocks of ice. I just hope this med works my Drs say we can not only stop bone loss but reverse it.

REPLY
2 replies
windyshores | @windyshores | Dec 21, 2021
In reply to @karla1966 "Hi , I'm a 55 yr old who has had multiple fractures in the past few..." + (show)
@karla1966

Hi , I'm a 55 yr old who has had multiple fractures in the past few yrs. Dx with osteoporosis with a DEX scan of -3.9 and was put on tymlos. From day one it caused a rapid heartbeat for about 5 minutes immediately following injection and after a few months I could feel my heartbeat in my kidneys and they ached/throbbed with every beat ...I stopped taking it at that time. This past June I was bending over struggling to put on a new pair of boots and blew out my L4 vertebre. I was started on Evenity in July . After 3 months I was still in terrible pain ...lower back and sciatica and decided to try Kyphoplasty even tho the Drs said it might not help ( this procedure was not that invasive or painful in my opinion) . I felt better for 2 days was standing and walking straighter and thought it had worked but on day 3 my pain was back. I've read through the comments here and noticed some similar ailments/possible side effects. I have always had pain in and around my hips and groin which I feel is worse now (makes me look like I walk like an 80 yr old too), all my joints ache the bigger the joint the more painful, and my feet every so often will become so cold like blocks of ice. I just hope this med works my Drs say we can not only stop bone loss but reverse it.

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I am with you, fractures and pain and hope! Here's hoping Evenity helps you!

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altonagirl | @altonagirl | Feb 3, 2022

Thank u for the detail of your journey
I was dianosed in Dec 2021 w DXA of -3.5. I'm TID for 55 yrs w gastroparesis. My GP &Endo are suggesting diff treatment Prolia from GP, Evenity from Endo. Since cardiac issues go w T1D I'm hesitant, but I don't have any history of them. I think Evenity seems likely -a 1 yr plan (then...who knows?), not lifetime w Prolia.
You said your Dr said patients doing well on Evenity so that's helpful.
How are u now since it's been over a yr w/Evenity? Are u on a diff rx? Just calcium & D? I'd love to hear from a patient rather than a Manufacturer 😊
Thank you!

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imatcha | @imatcha | Feb 4, 2022

I recently learned that I have a compression fracture at T9. I'm 74. I'm active and do exercises several times a week plus walking my dogs about 2 miles daily. I've lost 2" of height and have slight scoliosis. My doc wants me to consider Evenity. It sounds like it's a crap shoot with regard to the side effects. I currently take Actonel once a month and have had no side effects. I'm wondering if it's worth the risk.

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1 reply
landa | @landa | Feb 10, 2022

I started Evenity shots in November of 21. I am due for my fourth shot in about 10 days. It is important to keep your calcium levels up while receiving Evenity Therapy. I have been counting mg. of calcium and my past blood tests show that my calcium level is too high, and my potassium level is too high. I am also on coumadin, which means I have to watch my Vitamin K. It is all so confusing to me. I have a wonderful primary who is walking me through this, but am not getting lots of information about my high levels of calcium and potassium form my endocrinologist. Very difficult. It all seems to be such a thin line to walk.

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2 replies
windyshores | @windyshores | Feb 11, 2022
In reply to @landa "I started Evenity shots in November of 21. I am due for my fourth shot in..." + (show)
@landa

I started Evenity shots in November of 21. I am due for my fourth shot in about 10 days. It is important to keep your calcium levels up while receiving Evenity Therapy. I have been counting mg. of calcium and my past blood tests show that my calcium level is too high, and my potassium level is too high. I am also on coumadin, which means I have to watch my Vitamin K. It is all so confusing to me. I have a wonderful primary who is walking me through this, but am not getting lots of information about my high levels of calcium and potassium form my endocrinologist. Very difficult. It all seems to be such a thin line to walk.

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Is your parathyroid okay?

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landa | @landa | Feb 11, 2022

That was the first thing they checked and yes it was OK, but my thyroid is all over the place. I am on generic synthroid and never was a problem, but lately my readings are kind of crazy....up and down.
Potassium remained high and am waiting for test that was taken on Wednesday, hoping it has come down and calcium is normal.

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