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.

@lbmorgan44

Windyshores, thank you for your comments on the difference between Tymlos, Forteo and Evenity . All three medications boost bone formation and is the reason why I place them in one group. I believe it is good to have information around how these medications use different pathways to achieve results.

Overtime our bones require a balance between forming new bone and the breaking down and removing of old bone (resorption). Sclerostin, which increases with age, leads to bone loss and reduced bone strength and inhibits bone formation. Evenity blocks sclerostin. When this happens new bone is built more than the loss of bone. In addition Evenity reduces bone resorption thus increasing the bone mineral density (BMD). Evenity has a very different pathway for increasing bone density than Forteo and Tymlos.

Forteo and Tymlos use a Parathyroid Hormone (PTH) to activate bone-creating cells called osteoblasts which create new bone cells. Forteo and Tymlos do not slow the resorption of older bone.

Bisphosphonates (Fosamax, Boniva, Reclast) effect the bone resorption cells called osteoclasts. These cells absorb the bisphosphonate medication. The rate at which bone cells are broken down is slowed thus slowing bone loss.

I hope this give more clarity as to how these medications work inside the body. Thanks again for your comments. Every idea sends me on a deeper dive into how this all works. I find it reassuring to have more knowledge than less.

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I've been on Prolia for 8 years with no side effects. What to follow up with? Could not take Fosamax due to gastro side effects. Reclast, Evenity or....? Thank you for ANY insight!

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@lindalaw

I've been on Prolia for 8 years with no side effects. What to follow up with? Could not take Fosamax due to gastro side effects. Reclast, Evenity or....? Thank you for ANY insight!

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@lindalaw
The information you are seeking is best provided by medical experts. I strongly advise you to talk to your doctor or an endocrinologist to discuss which options would work best in your situation.

I have read that going off Prolia without a replacement medication can result in a sudden and rapid loss of bone density resulting in fractures particularly in the spine. Because of this your doctor/ endocrinologist may want to start you on a replacement medication before going off of Prolia.

I hope you find the help you are seeking.

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@lindalaw

I've been on Prolia for 8 years with no side effects. What to follow up with? Could not take Fosamax due to gastro side effects. Reclast, Evenity or....? Thank you for ANY insight!

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I’ve been I Prolia for 6 years and my endocrinologist has me starting replacement oral once a week called Risedronate, 35 mg tablets for 2 months to see how I tolerate it. I’m hopeful. I wish you luck….and absolutely get a physicians advice.

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@lbmorgan44

@lindalaw
The information you are seeking is best provided by medical experts. I strongly advise you to talk to your doctor or an endocrinologist to discuss which options would work best in your situation.

I have read that going off Prolia without a replacement medication can result in a sudden and rapid loss of bone density resulting in fractures particularly in the spine. Because of this your doctor/ endocrinologist may want to start you on a replacement medication before going off of Prolia.

I hope you find the help you are seeking.

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Thank you for your reply.

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@nhorn

I’ve been I Prolia for 6 years and my endocrinologist has me starting replacement oral once a week called Risedronate, 35 mg tablets for 2 months to see how I tolerate it. I’m hopeful. I wish you luck….and absolutely get a physicians advice.

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Is the doctor having you stop the Prolia while starting Risendronate? Or taking both together to wean off the Prolia? I really appreciate and thank you for your comments.

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@lindalaw

Is the doctor having you stop the Prolia while starting Risendronate? Or taking both together to wean off the Prolia? I really appreciate and thank you for your comments.

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My last Prolia injection was August 2022, six months ago. Not doing both, or weaning off Prolia.

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@readhead1226

I just finished my 1 year on Evenity. No side effects. Waiting on my new DEXA scan and want to know if anyone had improvement.

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Did you get good results? Can I ask how old you are and how active you were before starting Evenity? I am 71 and have tried everything else- fosamax, evista, and prolia, My spine is back in the normal range after Prolia but my hips have gotten worse. I'm very active- I have been working with a personal trainer for strength training several times a week for 4 years trying to address my osteoporosis that way. I have a Peloton and do a rigorous ride for 45 mins 3 times a week. My husband & I like to travel internationally and domestically and do that several times a year.
After reading these posts and the info about side effects I am very apprehensive.
Thanks you! Gulf Coast Woman (Janice)

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@gulfcoastwoman

Did you get good results? Can I ask how old you are and how active you were before starting Evenity? I am 71 and have tried everything else- fosamax, evista, and prolia, My spine is back in the normal range after Prolia but my hips have gotten worse. I'm very active- I have been working with a personal trainer for strength training several times a week for 4 years trying to address my osteoporosis that way. I have a Peloton and do a rigorous ride for 45 mins 3 times a week. My husband & I like to travel internationally and domestically and do that several times a year.
After reading these posts and the info about side effects I am very apprehensive.
Thanks you! Gulf Coast Woman (Janice)

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@gulfcoastwoman what is the score for your hips?

Have you considered Tymlos or Forteo? I chose Tymlos over Forteo because of the adjustable dose. I chose Tymlos over Evenity because I can apparently follow it with Evenity but not the other way around, at least at the time I last talked with my doc. I have done 18 months of Tymlos now and feel stronger. Many meds seem to help spine more than hips. I am considering hip pads!!

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Thanks so much for your prompt reply! My score is -3.2 for my hips.
My Dr. said that Medicare would not cover Tymlos and that it would only be paid our of my prescription plan. I checked and my share would be $665 per month!

What are hip pads?

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@gulfcoastwoman

Thanks so much for your prompt reply! My score is -3.2 for my hips.
My Dr. said that Medicare would not cover Tymlos and that it would only be paid our of my prescription plan. I checked and my share would be $665 per month!

What are hip pads?

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Tymlos has a patient assistance program. Is that first cost including deductible? I mena, does the cost go down? I get mine for free from Radius Assist via Togehter with Tymlos where they give you a personal representative. Evenity?Amgen does not have an assistance program and I could not afford that!

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