Anyone taken Evenity (romosozumab) for Osteoporosis?

Posted by arlene7 @arlene7, May 27, 2020

Has anyone taken Evenity? I understand it’s only been on the market for a little over a year. I’m hoping it will help with my severe osteoporosis. Any information is helpful.

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@kay44

I have had one infusion of 400mg Reclast a long time ago, no more. I tolerated it ok. I continued then with Alendronate I do know most important is that it has to be infused slowly. I asked for that. I had no kidney problems. You have to have your Calcium and Parathyroid measured after, that changes temporarily. One infusion improved my values in my spine a lot, so that was really positive. I had not researched this drug prior to taking it, nor, as I said earlier, did I know, that from that time forward, no dentist would want to pull a tooth anymore in my mouth, even 9 years later. Because of the dental aspect alone I would not take it again. Later, I read patients who had many infusions are the ones who seem to have significant problems.

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Hi mariajean03, I am so sorry I did not answer earlier. Yes, I only had one Reclast infusion in 2014. I then continued on Fosamax for 4 more years. That worked for me. This held me for a number of years without taking further drugs. Now In 2023 my bone density has fallen to a level where I need drugs again. My research now also made me aware of how many different drugs I and other people take which contribute to bone loss. Unless you accidentally drip over it you would never know. Ps I was told by my physician, that once you are stable , the drugs in your bones will hold you for a while without needing further drugs.

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@kay44

Hi mariajean03, I am so sorry I did not answer earlier. Yes, I only had one Reclast infusion in 2014. I then continued on Fosamax for 4 more years. That worked for me. This held me for a number of years without taking further drugs. Now In 2023 my bone density has fallen to a level where I need drugs again. My research now also made me aware of how many different drugs I and other people take which contribute to bone loss. Unless you accidentally drip over it you would never know. Ps I was told by my physician, that once you are stable , the drugs in your bones will hold you for a while without needing further drugs.

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@kay44, only bisphosphonates "hold you for awhile without needing further drugs." Not true for Prolia (especially!), Tymlos, Forteo or Evenity.

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@mitzica

@arlene7 Did you take Evenity for a year? What have been the results? I am about to start Evenity and am apprehensive. Thank you for any advice! @hopeful33250 are you aware of other discussion of Evenity? I am new to this discussion group.

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I will complete my 12 months of Evenity next month. So far, everything has been good. I even had to have an old root canal removed several months ago with counseling with my physician and the oral surgeon. I had a total hip replacement in my history from 12 years ago and could not risk the problem of my gum getting infected and traveling to my hip replacement. I hope that my bones have improved so that I can get surgery to fix my back. I still can't stand any longer than 4-5 minutes before having to sit down.

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@susanfalcon52

Okay. I had my first Evenity injections this morning. The facility and staff were great. So far, no side effects. Not even pain or swelling at injection sites. It’s only been six hours, but I had to tell someone. 🙂

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So delighted to hear that you did not have adverse reactions. Great start on your Evenity journey!

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@normahorn

I was told about Reclast after Evenity but got a completely unacceptable response when I asked if I would be making a lifetime commitment. I was told that we could discuss this after I started the program. I got more info after mentioning making an informed decision.

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That is the response I got to Prolia. . . that most probably Prolia would be a lifetime commitment.

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@bettersleep68

What's after evenity. More meds

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Prior to Evenity, fosamax for a few years, then switched to Actonel.
0ne year ‘vacation’ then Evenity.
Exploring what path looks like after Evenity. Not keen on Prolia due to loss of bone should you need to stop. Reclast?

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@birdie78

I had my second round of Evenity injections. Despite years of on and off fosamax both my hips and spine numbers continued to worsen. Other than a slight rash which cleared up in two days, I have had no side effects. I am very diligent about drinking lots of water and get plenty of exercise (walking, water exercise and some specific exercises for my back and shoulder). The duration of each injection is about 20 seconds and stings a bit, but I am already used to it and the nurse is very good at administering.

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I've had my first round of injections. I had both shots in my stomach. The needle was small and the injection felt like a small pinch. My stomach was uncomfortable for about three days. But overall I feel fine.

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@betsee

Prior to Evenity, fosamax for a few years, then switched to Actonel.
0ne year ‘vacation’ then Evenity.
Exploring what path looks like after Evenity. Not keen on Prolia due to loss of bone should you need to stop. Reclast?

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If Reclast is used as a follow up for other meds, my doc told me that a break from meds might be possible, since it stays in the system so long. My doc will monitor what is happening, not sure how. Also Dr. McCormick suggests CTX and P1NP tests to see what is going on and anticipate the need to do more Reclast, or alendronate.
Obviously no break is possible with Prolia and I would worry about the effects of long term anti-resorption in terms of jaw and femur fractures. Our docs can inform and I also read McCormick's new book Great Bones.

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@windyshores

If Reclast is used as a follow up for other meds, my doc told me that a break from meds might be possible, since it stays in the system so long. My doc will monitor what is happening, not sure how. Also Dr. McCormick suggests CTX and P1NP tests to see what is going on and anticipate the need to do more Reclast, or alendronate.
Obviously no break is possible with Prolia and I would worry about the effects of long term anti-resorption in terms of jaw and femur fractures. Our docs can inform and I also read McCormick's new book Great Bones.

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Thank you for the input. When you say a ‘break from meds might be possible’, you mean AFTER 1st Reclast yearly ? Trying to anticipate how soon after last Evenity I need to start new meds. I recall reading something to the effect of ‘one month + or - 7 days.
CTX is what??? I have done 24 hour calcium urine test, and CBC. but want to make sure that my endocrinologist requests all necessary bloodwork PRIOR to start of next drug. Thank you in advance for indulging my follow-up questions.

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