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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@arlene7

The side effects for every drug, regardless what it's for, always brings about questions of risk versus results. Since I was told that my bones were very brittle and my spine was the worse, it scares me to think of what may happen if I did fall. Stroke and hearrt attacks scare me as well.....so this is my "rock and hard place" too. I know that you can only take Evenity for 1 year, so I hope and pray that my bones improve and then I will need to decide how to maintain bones after that.

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I fell last year and got a Burst Compression Lumbar I Fracture along with a couple of other things. It is not worth having a break in your spine. It's very painful and if your bones are bad, you can't get surgery to fix it. I wish that I would have known about Osteoporosis before I fell. I didn't know that I even had it. I have just completed my 3rd Evenity shots and doing great on it. I hope that your bones get better so that you don't have to suffer through a break. I can only stand for 4-5 minutes at a time.

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@jerilk

Hi, I am about to start evenity, I was wondering if the shots hurt behind the arms. And did you have side effects

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I have only had three months of shots but I am having no noticeable side effects. And NO, the shots did not hurt me behind the arms. I don't hardly feel it when the shot is given.

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@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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@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 have found on Facebook there is a evenity support group which has been very very helpful. I haven't started it yet but I will be in December. And after everything I've seen done and read The only thing that's scaring me are the shots

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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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Yes, I took for one year, with no side effects. My scans afterwards showed significant improvement ( (my Endocrinologist was very pleased). After Evenity I had a Reclast infusion and continued to improve. Had my 2nd Reclast infusion this August. Next year I will have another set of scans to determine next course of action. Doctor mentioned maybe Evenity again.
Hope this helps. Good luck with your journey…it’s a very personal decision but for me it was the right choice.

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@arlene7

Yes, I took for one year, with no side effects. My scans afterwards showed significant improvement ( (my Endocrinologist was very pleased). After Evenity I had a Reclast infusion and continued to improve. Had my 2nd Reclast infusion this August. Next year I will have another set of scans to determine next course of action. Doctor mentioned maybe Evenity again.
Hope this helps. Good luck with your journey…it’s a very personal decision but for me it was the right choice.

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Thank you for your response & encouraging words. I am sitting in a medical facility and awaiting the first injection!

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I have been having “infusions” since June (2022).

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I’m so happy to have found this group. I just visited my endocrinologist yesterday, and Evenity was recommended for me, as well. My osteoporosis is also very bad in my spine. I’m praying that my insurance will cover it! Would love to hear any other feedback.

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@mitzica

Thank you for your response & encouraging words. I am sitting in a medical facility and awaiting the first injection!

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i also started yesterday. i’m a 66 yo with severe osteoporosis. T scores -3.0 to -3.3. i’m right now healing a serious wrist fracture (needed surgery)from a very hard fall while hiking in MT in september. i had just gotten dexa results in August putting me in the severe osteoporosis range with history of fractures (2 rib and right wrist) occurring while biking/hiking. i was contemplating fosamax and then this last fracture put me in a different category so i researched, talked to 2 endocrinologists and primary. All concurred go with Evenity. i’m a retired nurse and hubby is a primary care doc. i’m keeping up with my exercise and calcium and vitamin D. one down 11 to go. i feel a little achy but nothing more. I’ve gained so much knowledge from this site and appreciate everyone for sharing. Best to all as we continue this journey.

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I broke a bone in my leg due to osteoporosis and was placed on Evenity for a year ending October 2022. Here are my before and after DEXA scores:
After Score Lumbar Spine is -1.3 Prior Score Lumbar Spine was -2.0
After Score Femoral Neck is -2.2 Prior Score Femoral Neck was -2.7
After Score Total Hip is -2.1 Prior Score Total Hip is -2.1 (unchanged)
My scores are now back in the osteopenia range and I am very please with these results.

I did have some initial aches and pains and a headache with the first injection. The nurse practitioner recommended I take an antihistamine at least one hour prior to each injection. I took Zyrtec and never had any more aches/pains/headaches. I did experience intermittent discomfort at the injection site with each injection that lasted for about 24 hours; however, that was minimal compared to the pain from my broken leg bone from osteoporosis.

I do not tolerate bisphosphonates and did not want to take Prolia and have chosen to followup the Evenity with Evista. I am exercising, taking supplements and will be following up with DEXA scans at 6 months and one year to be certain that I am maintaining bone density.

Hope this information is helpful for those considering Evenity.

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