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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@rola

Thxs @windyshores, I wanted to ask you this question earlier, then lost my page, lol. Why they both were against you trying Evenity, for a maybe short time, after tymlos.

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"No data," "being studied." I am frustrated. I respect their caution but a lot of people on this forum are doing Evenity after Tymlos and with 7 fractures and a femur neck still at -3.6, I need more bone growth before "locking in."

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@carols42

Sorry for the delay in response but I did call Amgen twice since my post. The first person I spoke to about the possibility of Evenity containing sulfa basically said Evenity has never been tested for the presence of sulfonamides. She also said the raw materials used in the inactive ingredients in Evenity could vary according to availability. Sulfa is not listed as an ingredient in Evenity. That is the short answer. She never gave me a yes or no answer so after a few days I decided to call again.
This time I spoke to a pharmacist who read all of the ingredients to me and gave a similar but more detailed answer. He said the active ingredient in Evenity is a protein which is not expected to contain sulfa. There are also several inactive ingredients in Evenity. Due to the raw materials used to make the inactive ingredients there could be trace amounts of sulfonamides present. He emphasized “trace amounts” depending upon the raw materials used. My understanding of this is there could be trace amounts of sulfonamides present in Evenity depending upon which raw materials were used. He advised me to discuss this with my doctor. I can only assume this can happen with other drugs as well. I see my rheumatologist tomorrow to make the big decision.
I had been on Prolia for 3 years and had a total of 6 injections. I also had 4 compression fractures while on Prolia which I let heal naturally. I stopped Prolia after the 6th shot so I could have minor dental surgery. I had another compression fracture almost immediately and this time it was much worse. I was referred to a neurosurgeon and I had 4 kyphoplasties performed to fix the fractures. I was told to suspend the Prolia by my surgeon until after my procedure. While recovering from surgery I had 4 more compression fractures probably due to stopping Prolia but I had no choice in the matter. I had 4 more kyphoplasties to repair the new fractures and now it’s time to get back on something for my osteoporosis.
I reported all of this to Amgen and the pharmacist suggested that maybe Prolia wasn’t the best choice for me. I was told by my rheumatologist that since I had brachytherapy radiation for breast cancer 8 years ago I could not take Forteo or Tymlos. Evenity is probably my best option right now but is a really hard decision to make.
I have been told by 2 doctors that the Letrozole I took for 5 years for my bout of breast cancer most likely caused my osteoporosis. My surgeon said that the spine does not respond to osteoporosis drugs as well as other bones in your body when chemo meds are the main cause of your osteoporosis. I feel like I’m caught between a rock and a hard place but I have to do something before things get worse.

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Hello all,
I have osteoporosis, am on Letrozole and am worried about exacerbating it with this hormone blocker. My nutritionist had me switch my calcium pills to Algecal Plus and I also take Strontium booster. I also had my vitamin D checked and it was 21. It's now up to 43, but she wants it over 50. So, I'm getting there. It's really important to make sure your vitamin D is high enough for your bones to absorb the calcium. I also started a program at Osteostrong which will help build your bone. If you check out the NIH medical library website, you can see these really do work. I'm very hopeful.

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@karinpage

Hello all,
I have osteoporosis, am on Letrozole and am worried about exacerbating it with this hormone blocker. My nutritionist had me switch my calcium pills to Algecal Plus and I also take Strontium booster. I also had my vitamin D checked and it was 21. It's now up to 43, but she wants it over 50. So, I'm getting there. It's really important to make sure your vitamin D is high enough for your bones to absorb the calcium. I also started a program at Osteostrong which will help build your bone. If you check out the NIH medical library website, you can see these really do work. I'm very hopeful.

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@karinpage you may not care but the strontium will throw off your DEXA scores. Did they offer you Reclast? You might be able to get the radiologist to adjust for the strontium, not sure. It makes your bones look denser.

I also took letrozole- five years- and my doc would not give me Reclast due to afib (now disproven risk) and my bone score went down more than 10%. And I fractured.

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@windyshores

I posted a separate discussion on Evenity after Tymlos (or after Forteo). I have gotten two opinions and neither will prescribe that sequence due to "lack of data" so I am curious how/where people are getting this prescribed.

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Both my neurologist and my endocrinologist wanted me to go on Evenity after Tymlos. I have a long standing relationship with both of them, so I am following their direction.

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@windyshores

"No data," "being studied." I am frustrated. I respect their caution but a lot of people on this forum are doing Evenity after Tymlos and with 7 fractures and a femur neck still at -3.6, I need more bone growth before "locking in."

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Yes, I'm really sorry to hear that outcome @windyshores. If they said it was counterproductive, ineffective, or *harmful in that sequence, I'd understand. We really have to be our own advocate, too much has happened where the medical community has been asleep.

Thx for all your info, much appreciated.

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@karinpage

Hello all,
I have osteoporosis, am on Letrozole and am worried about exacerbating it with this hormone blocker. My nutritionist had me switch my calcium pills to Algecal Plus and I also take Strontium booster. I also had my vitamin D checked and it was 21. It's now up to 43, but she wants it over 50. So, I'm getting there. It's really important to make sure your vitamin D is high enough for your bones to absorb the calcium. I also started a program at Osteostrong which will help build your bone. If you check out the NIH medical library website, you can see these really do work. I'm very hopeful.

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Before I started Evenity I was taking a big dose of calcium (70% of daily calcium spread through out the day) plus Vit. D. My blood calcium was too high so my doctor wanted me to cut way back on the calcium supplements. Now I try to get my calcium with 12 ounces of milk, a cheese stick, a handful of almonds, only one calcium pill (which amounts to 20% of calcium), a multiple vitamin which has only 8% calcium)and other traces in food. I understand you can overdo the calcium supplements. Hoping my routine is sensible. Has anyone else ever been told they are taking too much calcium?

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@rola

Yes, I'm really sorry to hear that outcome @windyshores. If they said it was counterproductive, ineffective, or *harmful in that sequence, I'd understand. We really have to be our own advocate, too much has happened where the medical community has been asleep.

Thx for all your info, much appreciated.

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@rola there is no harm in doing Evenity after Tymlos, according to Dr. MCormick, the chiropractor osteoporosis expert with whom I just spoke. However, he leaves that option out of his new book "Great Bones" as well because studies have not yet been finished.

He mentioned that he has no liability in suggesting it because he is not a prescriber. The Boston doctors are very evidence-based meaning there needs to be a study or studies supporting a protocol before they will prescribe.

I am not surprised they won't prescribe Evenity after Tymlos. I am actually surprised that so many docs do. But it seems other medical environments are less conservative and evidence-based.

I am my own advocate but have hit a wall with no's from all docs.

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@windyshores, I can see you are your own advocate by all your research. Evenity seems to be so great at building bone before a bs, I guess I was hoping to be able to build as much as possible before thinking bs. I was hoping for you too! Take care.

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@rola

@windyshores, I can see you are your own advocate by all your research. Evenity seems to be so great at building bone before a bs, I guess I was hoping to be able to build as much as possible before thinking bs. I was hoping for you too! Take care.

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@rola I am almost done with Tymlos 🙂 Good luck!

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I just had my first 2 injections with Evenity for my Osteoporosis so I don’t have much too share. I have noticed that both arms are very sore which is understandable but my concern is insomia. I haven’t slept since my injections. It most likely won’t be the same for all of you sitting on the fence on what drug would be the best. If anyone has had Evenity before with INSOMNIA please reach out too me. Would love too share stories! Is it just “me?”

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