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.

retired123 | @retired123 | Apr 15, 2022

Now that the Evenity treatment is over, what was your experience with it? Thank you.

REPLY
callalloo | @callalloo | Apr 16, 2022
In reply to @jenniferhunter "@rosew17 I think what you are asking about is called kyphoplasty named because the spinal fractures..." + (show)
@jenniferhunter

@rosew17 I think what you are asking about is called kyphoplasty named because the spinal fractures cause "kyphosis" where the thoracic spine is bent forward like a stooped posture. It is also called vertebroplasty. This is a procedure where they use bone cement to put the fracture back together to try to keep a normal alignment of the spine. I think it would need to be done right away after a compression fracture before the bone heals back together, but that is a question for a spine surgeon. Kyphoplasty can be very successful according to doctors who discussed it with me about my mom.
https://www.mayoclinic.org/tests-procedures/vertebroplasty/about/pac-20385207

My elderly mom had a compression fracture at T12, and was not a candidate for kyphoplasty because of severe osteoporosis. They gave her a back brace instead and she was in rehab, but also followed up with a spine surgeon for 3 months that they consulted at the time of the fractures. After 3 months, her spine has fused the bone back together, and the doctor's concern was that she now has a 43 degree curve at that level which is worse than the initial fracture. He stressed that she needed to wear the brace consistently except when sleeping. Her outcome would have been better if she followed directions, but try to convince a 92 year old of that. She does not have pain, so there is no reason for spine surgery, but he said in a younger patient a 43 degree curve would indicate a need for surgery.

My mom has a history of blood clots in her calves and has been on Eliquis for several years without reoccurence. She is seeing an endocrinologist and also has a history of parathyroid disease that was pulling calcium out of her bones, and had surgery to remove the bad parathyroid gland. She had been on Alendronate taken weekly for about 10 years. According to the doctor that may not have the best results with a person with parathyroid disease. She has just started Evenity injections which need to be once a month for a year. I have to keep reminding her to drink enough water because Evenity can cause heart complications. She has never had a heart attack but is treated for high blood pressure. It is common for the elderly to lower liquid consumption because of difficulties with bathroom issues, etc, and they think they can get away with it and I've had this discussion with my mom for years. I told her it is important to drink water to avoid dehydration and prevent heart problems while on Evenity.

59 is pretty young for spine compression fractures and that can only get worse as you age without treatment for osteoporosis. If you have not been seen by an endocrinologist, that may be something to consider because they are a specialists in how all the hormones interact for biological functions of everything. You are also at menopausal age and loosing the female hormones that help maintain bone density. (I presume with Rose as a member name that you are a woman). Have you considered hormone replacement therapy? Has your doctor explained the side effects with Evenity and what you should do to minimize risk? It will be a long process to see if this is helping. Have you done any physical therapy that could strengthen the support for the spine? According to my spine surgeon, that is the best way to NOT need his services in the future. I had cervical spine surgery because of an injury from an old whiplash. You may want to write a list of detailed questions about all of this for your providers. Have you also been seen by a spine specialist?

Jump to this post

Jen, my endocrinologist checks his osteoporosis patients' for any parathyroid dysfunction before he puts them on any drugs for osteoporosis, including bisphosphonates. Reading your post noting you mother's experience with alendronate, now his approach makes sense. Since I didn't take any meds, I didn't ask about the pre-prescribing tests but am glad to know he's on his game if I ever need them.

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1 reply
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Apr 16, 2022
In reply to @callalloo "Jen, my endocrinologist checks his osteoporosis patients' for any parathyroid dysfunction before he puts them on..." + (show)
@callalloo

Jen, my endocrinologist checks his osteoporosis patients' for any parathyroid dysfunction before he puts them on any drugs for osteoporosis, including bisphosphonates. Reading your post noting you mother's experience with alendronate, now his approach makes sense. Since I didn't take any meds, I didn't ask about the pre-prescribing tests but am glad to know he's on his game if I ever need them.

Jump to this post

@callalloo It sounds like you have a good doctor. When my mom had elevated blood calcium for a year while they were tracking it, I think they waited too long before parathyroid surgery. Maybe they have to justify it with a certain level. For a long time they told her not to eat calcium rich foods like dairy because it would add to the blood levels. She's 92, so I don't know how much catching up she can do now at that age.

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redhead1226 | @readhead1226 | May 8, 2022

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.

REPLY
2 replies
redhead1226 | @readhead1226 | May 9, 2022

Hi – I just finished my 12 injections of Evenity. I had no real weight gain. Im waiting for my DEXA scan next month to see how the medicine worked. Im wondering if anyone else has finished and if they saw some results.

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1 reply
selfcare226 | @selfcare226 | May 9, 2022

thank you so much for this guide

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saz | @saz | May 9, 2022
In reply to @readhead1226 "I just finished my 1 year on Evenity. No side effects. Waiting on my new DEXA..." + (show)
@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.

Jump to this post

Congratulations for achieving à great goal. Please post your Dexa results now and before Evenity. I also can’t wait to see how much you improved and Keep my fingers crossed.

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1 reply
redhead1226 | @readhead1226 | May 9, 2022
In reply to @saz "Congratulations for achieving à great goal. Please post your Dexa results now and before Evenity. I..." + (show)
@saz

Congratulations for achieving à great goal. Please post your Dexa results now and before Evenity. I also can’t wait to see how much you improved and Keep my fingers crossed.

Jump to this post

I will be doing my DEXA scan in July and will def post my results. Has anyone else done this?

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1 reply
saz | @saz | May 9, 2022
In reply to @readhead1226 "I will be doing my DEXA scan in July and will def post my results. Has..." + (show)
@readhead1226

I will be doing my DEXA scan in July and will def post my results. Has anyone else done this?

Jump to this post

Apparently no body posted Dexa results after completing the treatment. Only before.
Are you waiting for July according to a particular reason?
I will receive my fourth shot end of May. My Dexa was below 4,7 and I am 64 years old. I had 3 fractures in the last 3 years (9 altogether since I was a child) and I used to maintain a very healthy lifestyle.

REPLY
vasso | @vasso | May 10, 2022
In reply to @readhead1226 "Hi – I just finished my 12 injections of Evenity. I had no real weight gain...." + (show)
@readhead1226

Hi – I just finished my 12 injections of Evenity. I had no real weight gain. Im waiting for my DEXA scan next month to see how the medicine worked. Im wondering if anyone else has finished and if they saw some results.

Jump to this post

Hi! Congratulations for achieving one so difficult goal without any side effect ! When you will have your DEXA results on July please inform us . I am 67 years old and I suffer from osteoporis . On September 2021 I fell on the street and broke my wright thighbon and my wright wrist straight away . Now I just started the treatment with Evenity ( after my doctors advice ) last week without any problem but I have as you had some concerns about side effects .

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