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.

trathfon62 | @trathfon62 | Jul 13, 2023

In reply to @galactica "Thank you so much for posting. My Dr. is pushing hard for me to go on..." + (show)

@galactica

Thank you so much for posting. My Dr. is pushing hard for me to go on Evenity. I have osteoporosis. I have some kidney issues and I have had a cracked tooth pulled in the past, bone loss in the jaw and another cracked tooth with a crown protecting it. Dr. is telling me that the atypical femur factures, necrosis of the jaw and side effects are rare and I'm worried about nothing. I just can't get with that cavalier attitude when the paper for the script gives me a phone number to call immediately if I am having pain in my legs after or during the injection therapy.

I can't seem to get past my gut telling me this is not a good idea. I have severe osteoporosis and the side effects I am reading that people are having, posted here and on other sites give me pause. I can't seem to get a real sense of what the actual patient experiences are from my Dr. I also have an issue with accountability. What happens if and when side effects occur? Who helps or undoes, or fixes those? I have to live with the consequences. I am asking myself if the reduction in quality of life which may or may not resolve and from what I have read above and elsewhere and are experienced on a daily basis are worth a few percentage points. I am wondering what support and active participation the pharma company is taking to support and address the issues/ side effects women are experiencing or is it simply, "well, we listed the risks, sorry", and they get on with their day while we live with these issues.

I am not saying to stick one's head in the sand or be in denial, but I feel like I have to really exhaust all possible solutions that are not medication based. An inclusive diet, exercise, cardio, energetic and mind/action approach. I want my decision to feel like I am doing this with as much awareness as possible because at the end of the day, the only one who will have to live with this is me. And I do not want to act out of fear or feel pressured.

These are all the issues that are circling around in my head given my recent not great dexa scan. I have healthy bone density in my femur, thighs. Spine is problematic. Do I want to trade this and feeling great now for all the irreversible risks? It takes a good two years for bone to remodel and if I am diligent, i mean really diligent, leaving no stone unturned and give myself the best non-med care and protocal, can I make a difference? That is where I am and that is what i am leaning towards vs a stonger spine but feeling horrible on a daily basis with no resolution of issues.

Anyone else have these feelings? Everyone who posted here at the onset of your treatment, I'd be interested to know how you are feeling as you progress. I am hoping to hear that it's all going well. I want to hear that, as this is still a very new drug and I have a lot of sensitivities. I await your truthful and hopefully good and not so good responses, i want to hear it all as I think this will be helpful to all.

Thank you.

Jump to this post

Hi,
Everything you said is exactly how I’m feeling. I went to two different doctors about my Osteoporosis of the spine and one said Tymlos is the only thing that will help and the other doctor said Evenity. I came close to signing up for my monthly shots but all of my questions and worries kept me up at night. Finally I decided to wait and try exercise, OsteoStrong and low dose estrogen cream with progesterone. I’m hoping I didn’t make matters worse. The upside is that I am very active, happy and feel good. I don’t want to lose the quality of life I have now. Please let me know if you find out anything that helps with your spine. I’ve never had good luck with pharmaceuticals. Sending good thoughts your way!

windyshores | @windyshores | Jul 13, 2023

@trathfon62 if you don't want to do Evenity maybe you could tolerate Tymlos. I had trouble with a full dose so talked to my doc, and started with two clicks out the full dose of 8 clicks on the pen that is used to inject the med. I have never done the full dose but 6 or 7 clicks out of 8 and had excellent gains. Tymlos does not affect jaw or cause atypical femur fractures. It is not without side effects but as a person with 7 spinal fractures, I can say the side effects are way more tolerable than fractures!

sedrake51 | @sedrake51 | Jul 13, 2023

I am so sad to hear about your negative experience with Evenity. After my first set of Evenity injections, I had severe adverse reactions and never went back. My body was literally screaming with pain from inflammation. It’s been six months and I am just getting back to normal. Back to supplements and exercise. No more new meds for me. Hope that your heart will heal itself. Wishing you the best!

lauratys | @lauratys | Jul 13, 2023

In reply to @pedsnurse61 "I am so sorry this happened to you. I finished 5 doses of Evenity and had..." + (show)

Hi, It is frustrating. I’ve posted before about stopping Evenity myself after 11 mos, should have stopped sooner, as I could not move without pain and am very active -hike, ski, mountain bike. I felt like I gave myself significant arthritis. Pad for a scan and had amazing results. BUT, with that said listen to your own body along with medical advice because you alone know how you feel and what is normal for you. I’m pretty sure my medical professional thinks I have an anxiety issue about Evenity but it made me feel like I was 90 and I’m 67. I’m on Fosomax now and reading Great Bones for a more educated approach myself. Hope you feel better but I remind myself that medicine is a science ever evolving and doesn’t have all the absolutes!

lauratys | @lauratys | Jul 13, 2023

In reply to @sedrake51 "I am so sad to hear about your negative experience with Evenity. After my first set..." + (show)

Same with me on Evenity though I am on Fosomax as I’m concerned with rebound that without Fosomax or similar bones can get worse than when you started.

shula | @shula | Jul 13, 2023

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.

pedsnurse61 | @pedsnurse61 | Jul 14, 2023

In reply to @lauratys "Hi, It is frustrating. I’ve posted before about stopping Evenity myself after 11 mos, should have..." + (show)

I am wondering if I should bother having a DEXA scan after only 5 doses. The Endocrinologist I went to for a second opinion said she has no idea, and she didn't bother to offer to call other specialist that might know or help. The Rheumatologist wants to put me on Fosamax. At this moment I feel like my bottle needs to recover from the Evenity side effects. I am also halfway done reading " Great Bones" and have learned so much. I wish he had written it years ago when I was first diagnosed. This site has helped me so much with support and venting and of course Education. I only wish I could go to the MAYO clinic to get their opinion of how to proceed with my issues.

pedsnurse61 | @pedsnurse61 | Jul 14, 2023

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

Sorry to hear this happen to you, can you tell me how high your BP was? These effects are not common. Were you very anxious before/after the injection? You need to hydrate really well before and after the injection. Please let us know how you are doing.

lauratys | @lauratys | Jul 14, 2023

In reply to @pedsnurse61 "I am wondering if I should bother having a DEXA scan after only 5 doses. The..." + (show)

In Great Bones he talks about first rounds of Evenity build bone and further in it is more antiresorbtive. Had I know this I would have switched to Fosomax sooner as Evenity effects just got worse but you have to do something to avoid rebound after Evenity which I didn't know either!

shula | @shula | Jul 14, 2023

In reply to @pedsnurse61 "Sorry to hear this happen to you, can you tell me how high your BP was?..." + (show)

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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