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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Profile picture for rbrand53 @rbrand53

I have been diagnosed with osteoporosis in my hips. My doctor wants me to start Evinity and after reading all the side effects I’m nervous about it. I have a stent in my widow maker and allergic to sulfa. I’m really trying to figure out what to do.

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@rbrand53
What is your T Scores and what age? No heart problems?

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Profile picture for kima12 @kima12

@rbrand53
I also have an allergy to sulfa and I have osteoporosis in my spine. I have taken 2-months of Evenity shots already with no side effects.

Everyone is different- I tried Tymlos for 5 weeks and had headaches right afterwards as well as when I woke up and my heart rate went up to 90-100+ BPM while laying down after Tymlos. I am very happy with Evenity so far and hoping for some improvement.

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@kima12
How did you qualify for Evenity ? How much is it? Was it under Medicare advantage.

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Profile picture for susanjohnston @susanjohnston

Thanks so much. Is there a reason you chose Prolia over Evenity?

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@susanjohnston
Yes I would like to know also

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Profile picture for dbivins @dbivins

During chemo and radiation for invasive ductal breast cancer I ceased my Prolia injections. I had osteoporosis before the cancer diagnosis. I had also begun letrozol, for a 5 1/2 year period. I waited 2 years until my next Dexascan (before continuing Prolia) that showed my bone density in many places to be -4. My doctor recommended Evenity. I returned to the Prolia until I had time to learn about Evenity. I went to the MCV/VCU head of bone health and discussed it with her. She said if you have had radiation of any kind, Evenity could cause bone cancer. I was glad I took the time to investigate it. I am still on Prolia and Bone-Up and Ultra Bone-UP, and Vital Proteins Bonine Collagen Peptides. Seven years later, and my last Dexascan showed I had improved to osteopenia in most areas. There are few weak spots at -1, -2.
While I was undergoing treatment for breast cancer I investigated Prolia. I found a study in University of South Carolina about Prolia and breast cancer. They claimed it caused mice to get breast cancer. I did get breast cancer after several years of taking Prolia. Prolia is manufactured by Amgen. When I received my Estrogen Positive Breast Cancer Chemo, it was also made by Amgen. One day after my Chemo, I would return to get a Neulasta injection to improve my blood count. That was also made by Amgen, and in the fine print it said - May cause tumor growth. !! I really had no choice. It was the only one I had if I wanted to live. But the fact that all three products were manufactured by Amgen was cause for concern. I am now 9 years out, and truly grateful for my life and time to see my family, my children and grandchildren, and even a great grandchild!

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@dbivins
What drug are you on now for osteoporosis? Or if and how did you go off Prolia?

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When I stopped Prolia, I just stopped, so the chemo could do its job. I waited until my next Dexascan, which was 2 years later and that was not smart. If I had known I could pay for an interim Dexascan, I should have done that. Instead I waited the two recommended years between scans. I am still on Prolia, every 6 months, and take Collagen Peptides plus the recommended dose of Bone-Up capsules. My doctor was impressed with my results. From -4, to Osteopoenia and a few -1, -2 spots.

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Profile picture for dbivins @dbivins

When I stopped Prolia, I just stopped, so the chemo could do its job. I waited until my next Dexascan, which was 2 years later and that was not smart. If I had known I could pay for an interim Dexascan, I should have done that. Instead I waited the two recommended years between scans. I am still on Prolia, every 6 months, and take Collagen Peptides plus the recommended dose of Bone-Up capsules. My doctor was impressed with my results. From -4, to Osteopoenia and a few -1, -2 spots.

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@dbivins
Wow…really you improved that much? How are you feeling?
No side effects from Prolia…hair loss, aches, etc?

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Profile picture for osteopatient2026 @osteopatient2026

@kima12
How did you qualify for Evenity ? How much is it? Was it under Medicare advantage.

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@osteopatient2026
My doctor said that my osteoporosis was so bad that Fosamax wouldn’t work and she gave me the options of Evenity and Tymlos. Since I had too many side effects from Tymlos, I went to Evenity and yes, Medicare pays for it in full for me.

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Profile picture for kima12 @kima12

@osteopatient2026
My doctor said that my osteoporosis was so bad that Fosamax wouldn’t work and she gave me the options of Evenity and Tymlos. Since I had too many side effects from Tymlos, I went to Evenity and yes, Medicare pays for it in full for me.

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@kima12
Thx for that…I think our doctors staff just does not know how to submit a “Prior Authorization” form for my Tymlos or any specialty drug for that matter.
Evenity is looking to be an option. Glad you are doing better.

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Profile picture for kima12 @kima12

@osteopatient2026
My doctor said that my osteoporosis was so bad that Fosamax wouldn’t work and she gave me the options of Evenity and Tymlos. Since I had too many side effects from Tymlos, I went to Evenity and yes, Medicare pays for it in full for me.

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@kima12
Thx…finally just got Tymlos approved on appeal…yippee…

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Profile picture for gretch19 @gretch19

@saturn1949 i too had a year of Evenity and 2 Prolia. Next step is either Reclast or alendronate. I am not happy about these options as I don’t wanna be on medication for the next 20 or 30 years. I just joined the Osteo collective with Dr. Doug to see if I can get other ideas. As far as Evenity, I think it’s a good drug. I had no issues whatsoever and I got 10% plus improvement in my spine. It did nothing for my hips, which is why my doctor suggested two rounds of Prolia. My issue with these drugs is that they are short term fixes

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@gretch19 This is what my plan has been also. I had my Reclast infusion in September and no side effects. Please keep us informed of what the Osteo collective recommends. Unfortunately Prolia did nothing for me after Evenity and Dr. Doug wasn’t surprised. It doesn’t always work for some.
I think that this is the new protocol that docs are following now. Evenity, followed by Prolia for 1 year and then Reclast.

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