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.

dreamjean1958 | @dreamjean1958 | Jul 14, 2023

I am also taking Evenity . My bone density is very poor . I was put on it due to being on Forteo 4 yrs ago No one followed up with the reabsorbtion med . So my bones are pretty bad. I just finished my 5 th injection. I guess I got lucky No questions were asked. Mine was approved right away . I sure hope it works . After a yr . I was told I will need Prolia . Do you get 2 infusions when you go in ? I have found the best place to get them are in my stomach. I had them in the back of my arm once . Much prefer the stomach . I sit in the comfy recliner and lay back. Nurse on each side . Not a lot of fat either . I myself had no side affects . Other than in the arm it hurt for about 3 days lol .

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1 reply
pedsnurse61 | @pedsnurse61 | Jul 15, 2023
In reply to @shula "Thank you for your reply. My BP was high and when feeling light headed it was..." + (show)
@shula

Thank you for your reply. My BP was high and when feeling light headed it was 161/74. I was well hydrated before the injection and drank a lot of water. I noted that one of the side effects of Evenity is dizziness...mine was temporary and subsided after more than one-2 hours. Yes, I was very anxious before my first injection. I am not sure that the light headedness was related to my anxiety and think it was a reaction to the drug as it occurred 30 minutes after the injection. I am feeling fine today. No side effects so far and tolerating the drug well. I am wondering if this will occur again for the next injection and how to manage feeling high headed. I sat in one place to rest and drank water. Having a friend meet me was of great help as well.

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Your BP is elevated. My only suggestion since you hydrated well before and after is to try and meditate or possibly have a massage before the second injection. I had brain fog for a few days after each of my injections, feeling tired, headache, not really light headedness. I would also encourage you to buy ( if you don't already have) a home BP machine so you can monitor yourself at home, morning and night when you are relaxed. I am glad you have support from a friend and of course this great site. We are all in this together.

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estaban | @estaban | Jul 15, 2023
In reply to @shula "Hi, I got my first Evenity injection today. After about 30 minutes I started to feel..." + (show)
@shula

Hi,
I got my first Evenity injection today. After about 30 minutes I started to feel very light headed and my hands were cold. The light headedness lasted for over an hour or longer and then began to gradually subside throughout the day.
The staff at the infusion center attributed the light headedness to my anxiety and asked me if they should call 911. My BP was elevated. I declined going to an ER. Feeling much better now. Has anyone experienced the light headedness after the injection? I will also inform my rheumatologist.

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I made it through 3 Evenity injections. By that time, the a-fib I'd had before starting Evenity was getting worse. I was light headed often, had fluctuations in blood pressure, swollen eyelids upon waking, and insomnia. My cardiologist ran an EKG which showed a change in heart rhythm compared to the one he'd done before starting Evenity. He put me on a heart monitor immediately. I told my endocrinologist what was happening and he said no one in Evenity trials experienced these symptoms. Now I know that's not true. Definitely feel very anxious about this situation. I have no idea what to do.

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1 reply
kauaimom | @kauaimom | Jul 15, 2023

I would love to hear what your DEXA was after being on Evenity for a year. Also, what was the follow up drug to Evenity- as I have read you loose any gains within 6 months if you don’t go on bisphosphonate after. Thank you for any information you can share.

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dreamjean1958 | @dreamjean1958 | Jul 15, 2023
In reply to @artscaping "@arlene7. Thank you so much for sharing your experience with Evenity. I noted the statement about..." + (show)
@artscaping

@arlene7. Thank you so much for sharing your experience with Evenity. I noted the statement about "everything" has side effects. I think that is true and the challenge becomes to make sure Evenity or other bone medications don't have an interaction with our current drugs or treatments. I also have an allergy to sulfa drugs.....so you did have and now it is possible that you will not have an allergic reaction to sulfa. No more rolling on the carpet naked to take care of the itching. Now that I have the neuropathic itch, I don't need anything else.

Arlene, there is one question about Evenity, I think many of us would like to hear. How long do you take Evenity? 2 years? And then what? I always want to know what comes next to protect the bone that is developed.

You have my good wishes for a helpful outcome. Please check in with us as you begin this journey. You have persevered beautifully. Now all you have to do is share ........ not a bad deal.

Be safe and protected from inner and outer harm.
Chris

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I believe you can only use Evenity for 1 yr . That is what my endocronolgist said . I will be going on Prolia after that .

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kauaimom | @kauaimom | Jul 15, 2023

Please share your results on Evenity. Also the follow up protocol. Thank you!!!

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windyshores | @windyshores | Jul 15, 2023
In reply to @estaban "I made it through 3 Evenity injections. By that time, the a-fib I'd had before starting..." + (show)
@estaban

I made it through 3 Evenity injections. By that time, the a-fib I'd had before starting Evenity was getting worse. I was light headed often, had fluctuations in blood pressure, swollen eyelids upon waking, and insomnia. My cardiologist ran an EKG which showed a change in heart rhythm compared to the one he'd done before starting Evenity. He put me on a heart monitor immediately. I told my endocrinologist what was happening and he said no one in Evenity trials experienced these symptoms. Now I know that's not true. Definitely feel very anxious about this situation. I have no idea what to do.

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@estaban this is helpful since I also have afib at times. Can you go on Tymlos? I adjusted the dose slowly up to a therapeutic level and did not have the afib that I expected I have almost completed the treatment.

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1 reply
estaban | @estaban | Jul 16, 2023
In reply to @windyshores "@estaban this is helpful since I also have afib at times. Can you go on Tymlos?..." + (show)
@windyshores

@estaban this is helpful since I also have afib at times. Can you go on Tymlos? I adjusted the dose slowly up to a therapeutic level and did not have the afib that I expected I have almost completed the treatment.

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windyshores I was supposed to take my fourth Evenity shot on July 12. I did not. As I said I've been very confused now as what to do. I know I will find another endocrinologist. I know nothing about Tymlos at present, but will certain do some research and talk to my new doctor. My afib problems have abated for which I'm very thankful. I have another appointment with my cardiologist on the 24th.

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lashu | @lashu | Jul 16, 2023
In reply to @dreamjean1958 "I am also taking Evenity . My bone density is very poor . I was put..." + (show)
@dreamjean1958

I am also taking Evenity . My bone density is very poor . I was put on it due to being on Forteo 4 yrs ago No one followed up with the reabsorbtion med . So my bones are pretty bad. I just finished my 5 th injection. I guess I got lucky No questions were asked. Mine was approved right away . I sure hope it works . After a yr . I was told I will need Prolia . Do you get 2 infusions when you go in ? I have found the best place to get them are in my stomach. I had them in the back of my arm once . Much prefer the stomach . I sit in the comfy recliner and lay back. Nurse on each side . Not a lot of fat either . I myself had no side affects . Other than in the arm it hurt for about 3 days lol .

Jump to this post

Hi. I am considering Evenity, which the insurance has approved based on my endocrinologist's recommendation. I have had considerable dental work, no implants, but root canal, cavities in the past, two molars removed within the last ten years, and when they were removed the dentists told me I had long term infections in my gums. For this reason I am concerned about necrosis of the jaw that seems to be a risk with all of these bone strengthening drugs. Have you had much dental work? I am 82 years old.

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3 replies
windyshores | @windyshores | Jul 16, 2023
In reply to @lashu "Hi. I am considering Evenity, which the insurance has approved based on my endocrinologist's recommendation. I..." + (show)
@lashu

Hi. I am considering Evenity, which the insurance has approved based on my endocrinologist's recommendation. I have had considerable dental work, no implants, but root canal, cavities in the past, two molars removed within the last ten years, and when they were removed the dentists told me I had long term infections in my gums. For this reason I am concerned about necrosis of the jaw that seems to be a risk with all of these bone strengthening drugs. Have you had much dental work? I am 82 years old.

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@lashu you could consider Tymlos or Forteo instead: they do not pose the same dental/jaw risks.

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