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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@lafee

Thanks for your response! Because of my CKD, Evenity and Prolia were the only shots that were recommended as they would not affect the kidneys. I figured I'd have the same results with Prolia as I had with Evenity because I'm so sensitive to drugs so I'm not going to try it. I'll check about the Tymlos but frankly it's probably not going to work for me. Yes, I'll get another DEXA and my docs are working together now.

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@lafee I don't know how bad your kidneys are but Tymlos did not pose any risk to mine. There is a slight increase in risk for kidney stones due to a rise in calcium levels, which many of us don't experience, but not effect on kidney function. The adjustable dosing was a godsend and my body adjusted as I ramped up.

Due to my kidneys, my endocrinologist did a 20% 1 mg dose, with one hour IV hydration and infusion of the Reclast over a whole hour. I hydrated the day before, day of and day after and took Tylenol. Reclast is usually once a year. With the low dose, I am doing it again after 3 months, at the same 20% dose, then three months after that, I will try 2 or 3mg.

If your eGFR is really low, like under 35, I have read that Reclast is then not recommended.

We are between a rock and hard place but if your doctor is flexible, you may find a good path!

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@windyshores

@sunny 65 my orthopedist told me that now that he does a lot of kyphoplasties, the risk of leakage of cement into lungs is much lower. However, the cement becomes sort of like glass so with the multiple fractures I have, fracture risk would probably go up with all that glassy material between vertebrae. He said it can be helpful for shorter term pain relief but that the ultimate outcome is the same. I wish I had asked more questions about what he meant.

I wonder if you could get free Tymlos with Radius Assist. I got mine for free. You need to have an income less than 3 times the federal poverty line.

Glad you have a wise, gentle therapist! I was told to wear a brace as little as possible to keep muscles strong. I have a soft brace with velcro that I got months after my fractures and that I use rarely , only when lifting things different from my day to day practices. Your situation must be different from mine. Perhaps the doctors feel the brace helps stabilize your fracture(s). I am curious about this difference in advice!

I usually have pain when I start walking but if I walk more than 20 minutes it gets a lot better. There are times I almost turn around but after a 45 minute walk I actually feel better. Lifting is what gives me pain, and opening windows !

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I been trying to walk at least 20-30 minutes every day. My pain doctor ordered CASH brace. It was very uncomfortable at the beginning. But we made some adjustments and I been using it when I walk outside or in the house. This brace supposed to stabilize fractures, promote healing and reduce the pain. I don’t feel it’s reducing the pain, at least not yet, but I feel more stable when I walk. My doctor wants me to wear it for no more than 6-8 weeks.

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@neesie0159

I was on Calcitonin for about 6 months, and my bone density got worse. Disappointing because I had zero side effects.

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I just want to try and see if Calcitonin reduces my fractures pain. I know that probably doesn’t do much for bone building.

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@sunny65

I just want to try and see if Calcitonin reduces my fractures pain. I know that probably doesn’t do much for bone building.

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Oh, okay. I hadn’t heard of it being used for pain relief. Probably worth trying to see if it does help.

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@sunny65

I have a new fractures in my spine. I started Evenity on July 2. My pain doctor wants to put me on Calcitonin. Not sure if this helps to heal fractures faster or help with pain and how it’s interact with Evenity since both drugs are for osteoporosis.Anyone has any experience or been on Calcitonin for osteoporosis ?

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Calcitonin has some bone preserving effect but is probably prescribed for you because it helps with bone pain. Both medications reduce calcium levels. You might want your calcium levels monitored. Sunny, so sorry about the fractures.

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I have, and it is generally for short term use after a fracture to help with pain and speed healing. I was on a 30 day dose nasal spray and started Evenity two months later, so not sure if there is an interaction—but you think the doctor would know. Both require increased calcium intake.

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@sandrac

I have, and it is generally for short term use after a fracture to help with pain and speed healing. I was on a 30 day dose nasal spray and started Evenity two months later, so not sure if there is an interaction—but you think the doctor would know. Both require increased calcium intake.

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I just wanted to ask you if Calcitonin helped with pain and fracture healing ? I don’t take a lot of calcium in pills but trying to get more with food. Probably I should ask my endocrinologist how much calcium I supposed to use now because I will be on Evenity and Calcitonin.

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It did help some with the pain and sped up healing, which is why it is prescribed in early stages of fracture healing. I would def consult with your doc about calcium and Vitamin D3 supplements. Both Evenity and calcitonin draw calcium from the body to work.

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@sandrac

It did help some with the pain and sped up healing, which is why it is prescribed in early stages of fracture healing. I would def consult with your doc about calcium and Vitamin D3 supplements. Both Evenity and calcitonin draw calcium from the body to work.

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Thank you on calcium and vitamin D advice. I started Calcitonin 3 days ago and pattern of my pain suddenly changed. It’s all over my back. Before it was mostly lower back. Question: does pain supposed to intensify before getting better or this means that drug is not going to work for me. I appreciate any answer based on your knowledge of using Calcitonin.

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No, my pain did not increase and it stayed in area of the back near the fractures. It gradually decreased, although I still have pain ten months after the fractures of T1 and T11. PT is helping to moderate it. That is only my own limited experience, however. I would consult my doctor if the pain is intensifying and/or spreading.

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