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.

@barbiea

Thanks and I agree about the assessment of the whole body. This is crazy I'm a very active person and all of a sudden this year --boom (I turned 60, but I don't think of myself as- older..lol) but I guess this is my wake up call, just wish it wasn't so urgent. I was pretty good for 10 years after my cancer treatment, I was more worried about the return of cancer, than bone loss. But I fought that and I'll fight this. I rec'd the call today, I go for my first Evenity shot on Jan. 5th. Funny (or not) thing is the shot will be given to me where I rec'd my cancer treatment..

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I have a cousin who had breast cancer a few years ago. She had a lot of cancer treatments that she said had destroyed her bone.

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@barbiea

Thanks and I agree about the assessment of the whole body. This is crazy I'm a very active person and all of a sudden this year --boom (I turned 60, but I don't think of myself as- older..lol) but I guess this is my wake up call, just wish it wasn't so urgent. I was pretty good for 10 years after my cancer treatment, I was more worried about the return of cancer, than bone loss. But I fought that and I'll fight this. I rec'd the call today, I go for my first Evenity shot on Jan. 5th. Funny (or not) thing is the shot will be given to me where I rec'd my cancer treatment..

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I go to the same type of facility for my Evenity Shot. I did not have cancer but there are several there getting IVs for that issue.

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@dianestanley

I have a cousin who had breast cancer a few years ago. She had a lot of cancer treatments that she said had destroyed her bone.

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yep, unfortunately it does. I had chemo and radiation. I had a lot of radiation as the cancer spread to one node during treatment. Luckily I was early stage, but still damage was done. How is your cousin now? Does she do any treatments? Thank you for your response..

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@dianestanley

I went to two different physicians in opposing health care programs in Louisville and I got different results on their Dexa Scans. So which one is correct? I went with the Dexa Scan from the surgeon's office. But, how could their be two different numbers. The one group two doctor's had decided that they were not going to put me on meds while the surgeon and the Endoclinologist stated otherwise. After discussing with the doctor who was able to get me on Evenity, it's hard to argue with the Endoclinologist and the Surgeon since they deal with this issue.

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Did you see a Rheumatologist?

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@karmakay22

Are your Evenity shots finished at this point? 11/2022? I just started and I am so so fatigued and just want to sleep! So weird!!

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Is fatigue the only symptom? How long does it last or is it on going? I will be starting in January 2023, curious. I'm wondering if fatigue is a common side effect, maybe it's the bodies way of mending? (growing bones). I would just rest when your tired. Regards..

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@dianestanley

I go to the same type of facility for my Evenity Shot. I did not have cancer but there are several there getting IVs for that issue.

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Yeah I'm hoping to meet someone else that's there for the Evenity shot. I'm ok with doing at the cancer ctr, the Nurses were very helpful with tips, etc when I was doing chemo. I'm hoping there still just as nice/good. I felt safe there.The center's only about 20 mins away. Otherwise I would have had to travel over 30 miles to Dr office. Glad he suggested the option to me.

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@barbiea

yep, unfortunately it does. I had chemo and radiation. I had a lot of radiation as the cancer spread to one node during treatment. Luckily I was early stage, but still damage was done. How is your cousin now? Does she do any treatments? Thank you for your response..

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My cousin had that metastatic breast cancer a few years ago. It was in one breast but she had decided to have a double mastectomy to make sure that she was doing everything possible. She had done a lot of chemo and other treatments over what seemed like a long period of time. She has done great but all of those treatments destroyed her bone. I believe she is on something for her bones now too. I hope that you get great results about your cancer. It's awful that you think you are living your life right and then end up with something awful.

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@dianestanley

My cousin had that metastatic breast cancer a few years ago. It was in one breast but she had decided to have a double mastectomy to make sure that she was doing everything possible. She had done a lot of chemo and other treatments over what seemed like a long period of time. She has done great but all of those treatments destroyed her bone. I believe she is on something for her bones now too. I hope that you get great results about your cancer. It's awful that you think you are living your life right and then end up with something awful.

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thank god I'm ok with the cancer dx. I was in treatment for about a year. It's been 10 yr since dx and 9 that I'm NED (no evidence of disease) But getting the dx of severe Osteo scares the hell outta me to..

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@barbiea

Did you see a Rheumatologist?

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No I didn't. After I broke the bones in my back, I just wanted to get that issue fixed. The surgeon was well known and very skilled so when he informed me that I needed a Dexa Scan and CT Scan, I did what he said. I really dont' want anyone operating on me but him. He had referred me to an Endoclinologist which I went to see him. But, my regular doctor had been treating me for all of the things the Endocinologist would be treating. My OBGYN was also sending me for Dexa Scans early on. I have learned a lot from all of them. My main goal is to get my bones stronger so that the Surgeon can fix my issues. After my injury, my back does not support my body, as I can only stand between 4 and 5 mins at a time. I have to sit down and then I am good for another 4 or 5 mins. I am in my second year from my injury.

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@barbiea

thank god I'm ok with the cancer dx. I was in treatment for about a year. It's been 10 yr since dx and 9 that I'm NED (no evidence of disease) But getting the dx of severe Osteo scares the hell outta me to..

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I know it. The Osteo scares me too! It can destroy your life. I can't lift anything, go anywhere unless I am sure that I can go into a store get what I need in 4-5 minutes. If I have to check out and there is a line, I can't do it. I got the Dexa Scan when my OBGYN informed me that I needed to start getting checked. I don't think most people understand that Osteo will change your life. What I have read is that when you go through menopause youcan lose much of your bone density and your body can't put it back. I did not smoke, watched what I ate, exercised heavily over 1/2 of my life, alcoholic drinks maybe 4 per year total. The only thing that I can figure is that some of the meds that I am on may have done it. I tell women everywhere to go get checked so that you will know where your stand with this disease. It's too late after you have broken a bone. When I slipped and fell, the pain was so bad, I just wanted to be put out of my misery. I did not sleep for several days and it hurt too bad to cry. I had gone to an Urgent Care Center but they would not give me an XRAY. Then I went to another one the next day where I got an XRAY. I did have a Burst Compression Lumbar I Fracture.

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