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.

windyshores | @windyshores | Jul 19, 2023

Evenity also has anti-resorptive properties especially in the last 6 months, according to Dr. McCormick and my endo. Did they consider Forteo or Tymlos for you @lab54? They are not anti-resorptive like the other meds and don't pose dental risks. So sorry for what you are going through.

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1 reply
gretch19 | @gretch19 | Jul 19, 2023
In reply to @kathryn01 "Since starting Evenity 4 months ago, I have had an appreciable increase in blood pressure. All..." + (show)
@kathryn01

Since starting Evenity 4 months ago, I have had an appreciable increase in blood pressure. All the medical contacts tell me that it’s not a side effect but nothing else has changed in my daily routine. Has anyone else had this experience?

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I have heard that it is a side effect. Will you stay on it regardless?

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1 reply
gretch19 | @gretch19 | Jul 19, 2023
In reply to @catalena "I’ll be starting Evenity very soon. I’ve had 4 spinal fractures. I feel that I’m out..." + (show)
@catalena

I’ll be starting Evenity very soon. I’ve had 4 spinal fractures. I feel that I’m out of time; can only hope that I’m not hard hit by side effects.

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I'll be interested in hearing how you do with it. I start on Aug 15. I'll be sure to post about my journey.

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1 reply
cat714 | @cat714 | Jul 20, 2023
In reply to @lab54 "I was prescribed Prolia two years ago & had dental issues ever since. After the first..." + (show)
@lab54

I was prescribed Prolia two years ago & had dental issues ever since. After the first injection, my dental specialists recommended not too continue with Prolia. Since taken Prolia, my body rejected my bone graft & had several infections with my teeth & gums. I have been in a lot of pain & unable too eat or chew properly. Had another bone density scan & was put on Evenity because my Osteoporosis had gotten worse. I hope & pray that Evenity doesn’t make my mouth issues worse. Evenity is a new drug & it doesn’t have the data like the others have. Has anyone had any dental issues on Osteoporosis medications? Would love too hear from you. Just had my first two injections of Evenity & concerned. Thank you!

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Had a wisdom tooth pulled with no problem
Dr had me wait 2 months off evenity then pulled . Then wait another month to resume injections

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bern06 | @bern06 | Jul 20, 2023

I'm going on my 11th Evenity injections. I had to have a dental bone graft after my second or third shots. It was recommended that I skip a month of the injections and have the bone graft in the month I skipped. Worked well for me. I've had annoying side effects - muscle aches and weakness, off and on headaches, pain at injection site for a few days and just weird sensations every now and again that may or not be related. But I'm putting up with it cause I need to improve my bones - pelvic fracture last March, spinal compression fracture last September and these are only my most recent ones!

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birdie78 | @birdie78 | Jul 20, 2023
In reply to @gretch19 "This is all very helpful for me as I weigh the pros and cons of both..." + (show)
@gretch19

This is all very helpful for me as I weigh the pros and cons of both Amgen drugs and decide on my course of action. None of the doctors I consulted with mentioned Forteo or Thymos. Only Evenity, Prolia and bisphosphonates. I also had difficulty getting my insurance company to approve Evenity or Prolia and now that I have finally been approved, I don't want to delay things any further. The bottom line is that, as you so well put it, there is no lasting cure, only a delay. I resisted taking any drugs for 8 years since my benchmark DEXA which revealed osteopenia. Now I have severe osteoporosis and I feel like I need to get on with a course of action. The recommended path is 1) Evenity followed by Prolia, or 2) Prolia by itself. Evenity with its black box warning scares me so much that I have put off starting anything for the past 6 months. The second option of Prolia alone may not be as effective in significantly raising my T scores, however it seems to be more widely recommended by friends and physicians. As someone who has always spent a great deal of care taking care of health and staying very active, I dread this decision.
I would greatly appreciated any shared experiences with Evenity and/or Prolia.

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I agree that the warnings give you pause, but my doctor has about 25 patients on it and no one has had any adverse effects. Every med you ever look at (including over the counter) has dire warnings. I think the most important thing is that your doctor has had experience with Evenity so you are not his experiment. I have severe osteoporosis and scoliosis so I didn't see any way of avoiding this as I want to stay very active-walking, swimming, light weights and gardening. So far, so good. Hoping round 3 is uneventful.

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kathryn01 | @kathryn01 | Jul 20, 2023
In reply to @gretch19 "I have heard that it is a side effect. Will you stay on it regardless?" + (show)
@gretch19

I have heard that it is a side effect. Will you stay on it regardless?

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As I just had my 4th shot, I have some time to do research. My physicians and medical staff giving the shots all say that high BP isn't a side effect but I suppose that any individual could be affected differently. Also, given the fact that stroke is one of the Black Box warnings - and high BP can be the cause of stroke, I have to do more research.

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1 reply
windyshores | @windyshores | Jul 20, 2023
In reply to @kathryn01 "As I just had my 4th shot, I have some time to do research. My physicians..." + (show)
@kathryn01

As I just had my 4th shot, I have some time to do research. My physicians and medical staff giving the shots all say that high BP isn't a side effect but I suppose that any individual could be affected differently. Also, given the fact that stroke is one of the Black Box warnings - and high BP can be the cause of stroke, I have to do more research.

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@kathryn01 I was told by my doc and read in McCormick's book that Evenity does the most bone growing in the first 4-6 months. I wonder if that means you could stop and switch to something to lock in your gains-?

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1 reply
kathryn01 | @kathryn01 | Jul 20, 2023
In reply to @windyshores "@kathryn01 I was told by my doc and read in McCormick's book that Evenity does the..." + (show)
@windyshores

@kathryn01 I was told by my doc and read in McCormick's book that Evenity does the most bone growing in the first 4-6 months. I wonder if that means you could stop and switch to something to lock in your gains-?

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Thank you. Good info.
I am going to do some research & will post anything I discover.

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bern06 | @bern06 | Jul 21, 2023

Think I will ask my doctor if I can skip these last two injections. He has already told me I will follow up with Prolia to help keep any bone improvement made with Evenity. My doctor said he's seen very good results in patients with this drug so I'm very hopeful. I've been very lucky in my 71 years to have had to take very few prescription drugs. As someone mentioned even OTC drugs have side effects. We all have to make the best decisions possible for our own health with the help of a trusted and well informed physician.

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