Long term side effects of Evenity

Posted by polite @polite, Aug 31, 2023

My Bone Specialist Prescribed and My Insurance Co. approved Evenity. Would like more information on long term side effects and results; to help me decide on Evenity vs. Tymlos or Forteo. Many thanks in advance .
polite

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Profile picture for nanrox77 @nanrox77

My sister fractured her pelvis and was put on Evenity while recovering. She is 77 yrs old and never had any real medical problems. She has been on for over a year with a 6 month interruption due to insurance issues. Her primary care MD discovered last month that she has a rather loud heart murmur not present before. Echo shows mitral valve leakage. Cannot find if this could be related to the Evenity. Has appt with card MD soon.. Any ideas or info out there??

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Welcome to connect. I looked at a couple of places and couldn’t find valve disease in particular, but even its has a boxed warning about myocardial infarction and stated heart and vessel issues. Mostly it just says to let your doctor know if you have a history of heart disease.
Has your sister discontinued the evenity?

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nanrox77,
Uneven blood flow can create stress on the valve leaflets and the mitral annulus. Injury to the valves can become a site for calcium buildup. While atrial fibulation has been evidenced with Evenity, Evenity's disruption of flow causing valvular damage has not been established.
There is a study in mice which shows Evenity to be protect of the mitral valve.
Sclerostin which is found in the heart at sites of calcification was long thought to be moderate the progression of valvular disease. Evenity's mechanism of action reduces the presence of sclerostin.
There isn't evidence in the literature. And most of us earn leaky valves with age. My guess would be that the progression is related to Evenity.
It will be interesting to hear the cardiologist's thoughts. I hope that it's a minor leak, that the pelvis is healing and that your sister switches to Forteo.
Best wishes to you both.

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Profile picture for pedsnurse61 @pedsnurse61

It is a very hard and difficult decision to start on Evenity. I encourage you to read the blog " My Experience on Evenity for treating Osteoporosis" on the Mayo Connect site. I had to stop taking Evenity after the 5th dose due to palpitations and other side effects that were getting worse. I truly had high hope that I would be able to complete the 12 months on Evenity but I got too scared. I still don't feel " right" but am hopeful after seeing 2 different Endocrinologists explained to me that it could take several months for the medications to be out of my system.
There is a lot of support on this site and I encourage you to gain as much knowledge as possible before starting any medication treatment option.

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Thank you for sharing your experience and thoughts. I’m about to have my 3rd Evenity shot but feel like someone has a voodoo doll of me and having too much fun. Did you go on any other treatment after you stopped Evenity? How are you doing??

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Profile picture for vidal @vidal

Thank you for sharing your experience and thoughts. I’m about to have my 3rd Evenity shot but feel like someone has a voodoo doll of me and having too much fun. Did you go on any other treatment after you stopped Evenity? How are you doing??

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Are you saying that you had some body pain after starting Evenity?

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Profile picture for vidal @vidal

Thank you for sharing your experience and thoughts. I’m about to have my 3rd Evenity shot but feel like someone has a voodoo doll of me and having too much fun. Did you go on any other treatment after you stopped Evenity? How are you doing??

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I went on Fosimax for 6 months per my Endocrinologist's recommendation. Since than I continue to be on my Estradiol low dose patch ( which I have been on for many years). My Endocrinologist said she will keep me on it for a few more years. I walk 4-5 miles a day, practice Yoga, lift weights a few times a week and enjoy life. Everyone has a different experience on Evenity with side effects, I hope you make the right decision when it comes to your health and the pros/cons of being on it.
Thank you for asking how I am doing.
Lisa

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Profile picture for Chris, Volunteer Mentor @auntieoakley

Welcome to connect. I looked at a couple of places and couldn’t find valve disease in particular, but even its has a boxed warning about myocardial infarction and stated heart and vessel issues. Mostly it just says to let your doctor know if you have a history of heart disease.
Has your sister discontinued the evenity?

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Cardiologist says not related to Evenity. Rheumatologist is continuing Evenity. She also says no connection.

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Profile picture for gently @gently

nanrox77,
Uneven blood flow can create stress on the valve leaflets and the mitral annulus. Injury to the valves can become a site for calcium buildup. While atrial fibulation has been evidenced with Evenity, Evenity's disruption of flow causing valvular damage has not been established.
There is a study in mice which shows Evenity to be protect of the mitral valve.
Sclerostin which is found in the heart at sites of calcification was long thought to be moderate the progression of valvular disease. Evenity's mechanism of action reduces the presence of sclerostin.
There isn't evidence in the literature. And most of us earn leaky valves with age. My guess would be that the progression is related to Evenity.
It will be interesting to hear the cardiologist's thoughts. I hope that it's a minor leak, that the pelvis is healing and that your sister switches to Forteo.
Best wishes to you both.

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Cardiologist says not related to Evenity. Says it is not a minor leak and will likely need repair. When will be determined after a TEE and a card cath. He definitely wants the tests before the holidays. She is scheduled for Dec testing. Pelvis is healing but she still has sensitive areas where she says bones don't feel quite right.

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This blog has given me encouragement just for the fact that others have struggled or are struggling with their diagnosis and/or treatment.
My doctor has recommended that I start taking evenity. I am still not sure what way to go but I know I need to take something as my t scores are very low. My mother had osteoporosis and suffered rib fractures and a broken hip in her later years. Also, she became very crippled and I want to avoid any of that if at all possible. Any comments or suggestions are welcome. Thank you in advance.

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Profile picture for girlgma9 @girlgma9

This blog has given me encouragement just for the fact that others have struggled or are struggling with their diagnosis and/or treatment.
My doctor has recommended that I start taking evenity. I am still not sure what way to go but I know I need to take something as my t scores are very low. My mother had osteoporosis and suffered rib fractures and a broken hip in her later years. Also, she became very crippled and I want to avoid any of that if at all possible. Any comments or suggestions are welcome. Thank you in advance.

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I took Evenity for 1 year. No noticeable side effects and great gains. You will have to follow-up with another drug so that you dont lose the gains. Now is a good time to ask your doc about sequencing of osteoporosis drugs, which ones and rational for those recommendations.

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Profile picture for girlgma9 @girlgma9

This blog has given me encouragement just for the fact that others have struggled or are struggling with their diagnosis and/or treatment.
My doctor has recommended that I start taking evenity. I am still not sure what way to go but I know I need to take something as my t scores are very low. My mother had osteoporosis and suffered rib fractures and a broken hip in her later years. Also, she became very crippled and I want to avoid any of that if at all possible. Any comments or suggestions are welcome. Thank you in advance.

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Hi @girlgma9. Just to be clear, have you been on any medications for osteoporosis up until now?

I wholeheartedly agree with @gravity3 regarding speaking with your doctor regarding sequencing. After doing your research, you might have decided that there are certain medications you don't want to do. Additionally, there are certain medications that may preclude others. For example, I did Evenity for one year, and then one year of Tymlos. The plan was that I would do two years of Tymlos . The doctor who prescribed that sequence didn't take my insurance after I changed my policy, so I went to my endocrinologist to renew my prescription for the second year. He freaked out. It turns out that this sequence of Tymlos after Evenity is very rarely done, and I could not find any doctor who would prescribe Tymlos for the second year. I'm now on Reclast.

I completed 12 months of Evenity with zero discernible side effects and great gains.

Best wishes to you moving forward!

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