Anyone taken Evenity (romosozumab) for Osteoporosis?
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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"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."
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.
@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.
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.
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.
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?
@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.
@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.
@rola I am almost done with Tymlos 🙂 Good luck!
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?”