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 Bones, Joints & Muscles group.

@rosew17

I also have fractures on T8 and 9 for unknown reasons and no trauma . I was taking Prolia for the past 4 years and never had a fracture . I’ll have my first injection of eventie in one week .
I’m also thinking of getting kythoplasty . Has anyone had success with this ?
Im 59 and have a minus 5.1 for my BMD. Im very worried about the blood clot side Effects since I have a blood clotting condition of DVT. But never had a DVT. I hope to hear from someone with same issues . I had Osteo since I’m 46.

Jump to this post

@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?

REPLY
@rosew17

Can you tell me about the Kythoplasty ? I’m thinking about doing it . Did it ever help you ? I also wanted of know about your walk . My BMD is -4.8 in my spine . I have 3 fractures and do not know how it happened .
How is the eventie now ?

Jump to this post

My orthopedist was not eager to do kyphoplasty. He does it mainly for short term pain relief if needed, and told me the outcome was the same whether it was done or not done. There is some possibility of the cement migrating to the lungs (my doc says he has not seen this) and also the procedure makes the vertebra glass-like so there may be more risk of fracture in nearby vertebrae. I chose not to do it but did have months of pain which continues to some extent, because several of my vertebrae are fractured so the whole structure of my spine is altered. Another patient who sees my orthopedist was going to have a kyphoplasty but the doc then recommended against.

REPLY

I am also considering this drug. My main concerns are the same as yours, heart attack and stroke, although I have no history of either. Another concern is that my calcium level is low and that I may have an absorption issue. I meet with my rheumatologist next week for recent lab work so we will see what happens. Praying all continues to go well with you!

REPLY
@knpbads69

I am surprised no one has replied to your post. I too have experienced chronic joint pain since I started 2 months ago. Ironically, I received my 3rd session of 12 today. I worked around the house for about an hour this afternoon and I can hardly move without stiffness and pain. Unfortunately, I received my last dose of Covid -19 around the time I started Evinity, so I really don’t know which is the culprit, but I know it’s from one or the other. I am 51 and my dr stated my density numbers were so low, he knew my insurance would cover. So, I had to decide what was important to me. I was very encouraged knowing my bones will actually gain instead of just halt. But, I am having growing concern as time goes on. About 2 weeks after my 1st shot (early September) I worked around my house for several days lifting, pushing etc… my body has not recovered since. It started with lower back pain and slowly started going down the side of my right thigh. I can not stand longer than 3-5 minutes without excruciating pain and burning!!! Ibuprofen and lots of it will help but I know that regimen is detrimental also. I’ve been told by many it sounds like my IT band, not sciatica. I will follow up with my dr in January and I will see what he says if I can endure that long. I will try to remember to update thread then. I would love to hear from anyone else who may be experiencing same symptoms.

Jump to this post

I too have been going back-and-forth between doctors who say it’s sciatica or IT band. It seem to start when I started the Evenity which was prescribed for me six months after I had a compression fracture of my spine due to a boating accident. I am borderline osteoporosis, but otherwise a healthy 70-year-old who is very active. I’ve had 10 shots so far, and after reading your posts I’m not sure I’m going to continue. It could be a coincidence with the symptoms, but I can see no other cause for this. It’s very frustrating not to be able to walk more than a few blocks without the pain, or drive a car without cruise control.

REPLY
@debja

I too have been going back-and-forth between doctors who say it’s sciatica or IT band. It seem to start when I started the Evenity which was prescribed for me six months after I had a compression fracture of my spine due to a boating accident. I am borderline osteoporosis, but otherwise a healthy 70-year-old who is very active. I’ve had 10 shots so far, and after reading your posts I’m not sure I’m going to continue. It could be a coincidence with the symptoms, but I can see no other cause for this. It’s very frustrating not to be able to walk more than a few blocks without the pain, or drive a car without cruise control.

Jump to this post

Good evening @debja. A big welcome to Connect. I see you all already touching base with other members having similar issues and decisions to make. I can offer some current experience for you and hope it will help. By the way…..the mission of Connect is to improve the quality of life of every member.

So let me start by saying that I am currently battling what is probably an IT Band irregularity. This is the second one I have had and the first one on my left side. So…..I am trying MFR (myofascial release therapy) for several weeks and it is slowly becoming less painful. These IT bands are composed of some heavy-duty Fascia that is stretched during exercise especially when we overdo it and overuse the muscles. It does take time to release the fascia material. Along with MFR Yoga stretches every morning, application of ice several times a day, and medication that will help control the pain. seem to be the most frequently suggested solutions for pain and discomfort. Have you used medical cannabis for helping with pain? I use both a tincture and a topical when needed.

Please tell me more about your compression fracture injury. Did you have surgery? In a post a couple of lines above yours, @jenniferhunter discusses her mother's issues with a compression fracture and her experience with osteoporosis. I hope she will be able to respond to your request for some help with specific options for your continued pain.

May you be free, protected ad safe from inner and outer harm.
Chris

REPLY
@artscaping

Good evening @debja. A big welcome to Connect. I see you all already touching base with other members having similar issues and decisions to make. I can offer some current experience for you and hope it will help. By the way…..the mission of Connect is to improve the quality of life of every member.

So let me start by saying that I am currently battling what is probably an IT Band irregularity. This is the second one I have had and the first one on my left side. So…..I am trying MFR (myofascial release therapy) for several weeks and it is slowly becoming less painful. These IT bands are composed of some heavy-duty Fascia that is stretched during exercise especially when we overdo it and overuse the muscles. It does take time to release the fascia material. Along with MFR Yoga stretches every morning, application of ice several times a day, and medication that will help control the pain. seem to be the most frequently suggested solutions for pain and discomfort. Have you used medical cannabis for helping with pain? I use both a tincture and a topical when needed.

Please tell me more about your compression fracture injury. Did you have surgery? In a post a couple of lines above yours, @jenniferhunter discusses her mother's issues with a compression fracture and her experience with osteoporosis. I hope she will be able to respond to your request for some help with specific options for your continued pain.

May you be free, protected ad safe from inner and outer harm.
Chris

Jump to this post

Thanks Chris – I stumbled across the Mayo site in my search to figure out what is the source of this pain. which is going on nearly a year now. I did not have surgery for the fracture – just a brace for a few months and meloxican prescription antiinflammatory – Other than the day of the injury – I didnt have much pain.(none in my leg) So I gradually increased my activity over the next six months. – more walking, occasional 9 holes of golf and pickleball (which I felt might have triggered it – and have stopped). I do apply CBD occasionally or at bedtime when it keeps me awake – and love a program called Classical Stretch on PBS that I try to do daily and the PT exercises prescribed. I have tried pilates on a reformer under PT supervision, but that triggers it. I have tried acupuncture which sometimes help, but last time it triggered a really painful experience during it. I will look into the myo-f release therapy you suggested – I have been doing deep massages. I appreciate your response. Deb (RN) ps what is a mayo mentor?

REPLY
@debja

I too have been going back-and-forth between doctors who say it’s sciatica or IT band. It seem to start when I started the Evenity which was prescribed for me six months after I had a compression fracture of my spine due to a boating accident. I am borderline osteoporosis, but otherwise a healthy 70-year-old who is very active. I’ve had 10 shots so far, and after reading your posts I’m not sure I’m going to continue. It could be a coincidence with the symptoms, but I can see no other cause for this. It’s very frustrating not to be able to walk more than a few blocks without the pain, or drive a car without cruise control.

Jump to this post

@debja My fellow Mentor, Chris @artscaping mentioned your post to me. I'll answer your question about mentors. We are also members on this forum and have been asked by Mayo to help facilitate discussions because of the track record in helping others and the compassion and quality of our responses. Moderators are Mayo employees, and mentors are volunteers. As mentors, we help each other and help direct responses to other members toward a post if they have experience in that type of situation. I am a spine surgery patient, but also have experience with health issues for family members, so I can engage in different topics. Both Chris and I are believers in Myofascial Release Physical therapy because we have gotten good results from it personally.

My physical therapist has had me roll on a foam roller for tight IT bands, and she has done myofascial release on my legs too. Some of this got more complicated because I fractured my ankle a couple years ago which changes everything when you start walking differently because of weakness or pain. I also have a pelvis that sometimes slips out of alignment and that causes back and sciatic pain. It is common for this type of pelvis dysfunction to mimic a spine problem because of muscles that connect the pelvis and the spine. These imbalances tend to create overly tight muscles and muscle spasms that restrict movement.

Here is a link that explains a lot of possible issues. It is very technical and written for physical therapists.
https://mskneurology.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/
You should direct your questions about your Evenity injections to your doctor. There are lots of reasons for muscle tightness, particularly as we age and you can't draw a correlation between muscle tightness and Evenity injections. Please do not let any post here influence your decision to stop a medication. Talk to some one who is trained to answer that question, namely, your doctor or pharmacist. We are just patients like you, and not qualified to give medical advice. All we can do is share our experience and learn from each other.

My 92 year old mom has just started Evenity injections that will go for a year. She has severe osteoporosis and had a spontaneous compression fracture of her spine, and she remains at very high risk for that to happen again. For now, she is living on her own, but if more fractures were to happen, that could change in a hurry. The best way to prevent that situation is to prevent it as best you can with the help and advice of your doctors. Because of the severe osteoporosis, she was not a candidate to have the bones cemented back together, and she had a back brace and spent time in rehab. Her spine isn't in great shape either with vertebrae that slip past each other. Luckily, she is not in pain because of her spine, but it has healed into a kyophosis curve of 43 degrees that is permanent now, so she can't stand up straight if she wanted to. The spine surgeon said if she was a younger person with a 43 degree curve, surgery would be indicated, but since she has no pain and at her age, it is best left alone.

It's great that you are staying active and doing a lot of stretching. I think that is a key to staying young.. I'm guessing Chris may have shared our MFR discussion, but I will share it again.

Here's the discussion on myofacial release therapy…

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

There is a provider search at http://mfrtherapists.com/

Did you have any questions about my mom's experience with osteoporosis and bone fractures?

REPLY
@arlene7

So glad to hear this. As mentioned in one of my emails, I had not heard that Evenity injections were also available in the abdomen. Maybe you may want to inquire about the injections in the arms….just a thought. Take care

Jump to this post

Arlene Hi!
M

Arlene Hi !
May we have any update on your treatment . Now you should have completed your injections .
Take care

REPLY

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

REPLY
@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.

REPLY
@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.

REPLY

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
Please sign in or register to post a reply.
  Request Appointment