Prolia treatment for osteoporosis: What is your experience?

Posted by Veruska @veriska, Mar 7, 2017

I received the results from my bone test and they have recommended I start Prolia. I have read the side effects and I am concerned. Has anyone use this drug and if so what side effects have you experienced. Thank you

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@ladys2

I used Prolia for 2 years, which increased my bone density 14%. No specific side effects, just aging

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I was on Prolia for at least 8 years. The doctor wanted to transition me to Evenity, but after the 2 injections I developed really bad back pain and the injection sites swelled up. I'm not sure I want to have more bone with Evenity as it was rumored that some of the drugs that make bone cause cancer in rats. My doctor actually took an advertising ad out of his office that said one of these drugs that make bone did cause cancer in rats. He said that it wasn't a proven outcome, but it was enough to scare me away from drugs that actually make bone.
hsum

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@hsum4

I was on Prolia for at least 8 years. The doctor wanted to transition me to Evenity, but after the 2 injections I developed really bad back pain and the injection sites swelled up. I'm not sure I want to have more bone with Evenity as it was rumored that some of the drugs that make bone cause cancer in rats. My doctor actually took an advertising ad out of his office that said one of these drugs that make bone did cause cancer in rats. He said that it wasn't a proven outcome, but it was enough to scare me away from drugs that actually make bone.
hsum

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@hsum4 Forteo and Tymlos (but not Evenity) originally had a black box warning about bone cancer, but that warning has been removed. I read that not a single human has gotten bone cancer from these medications. Of course if you have breast cancer in your bones or have had radiation, they are not appropriate. The rats in the study were given huge doses I believe.

Editing to add that Evenity does have a warning about cardiovascular risk for some patients.

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I have been on Prolia for 5 years with no side effects. I was taking anastrozole for 5 years and it was recommended to me. I have osteoporosis and my bone density is slightly better. All the best to you.

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@reneejean

I have been on Prolia for 5 years with no side effects. I was taking anastrozole for 5 years and it was recommended to me. I have osteoporosis and my bone density is slightly better. All the best to you.

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I was on Prolia for 2 years without any side affects. Unfortunately, even while under treatment, I recently had 2 pathologic fractures. So, this week I started Tymlos. I’ve spoken to a rheumatologist who was involved with the drug manufacturer and he told me that no humans developed bone cancer. Unfortunately, most treatments come with potential side effects so it is important to consider all factors. At 71 years old I don’t want to live with the increased chance of more fractures due to severe osteoporosis.

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I’ve been on Prolia for 3 years with no side effects. My spine improved & is now in the normal range. I’ve continued to lose bone mass in my hips & they are -3.2.
My Dr recommends Evenity but I am reluctant. Tymlos & Forteo are not covered by Medicare & my copay under my prescription plan is over $1k a month. I don’t qualify for assistance. I’ve added more exercise ( weight vest & other stuff) & am staying on Prolia for now. I’m 71 & fit. Very active.

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@gulfcoastwoman

I’ve been on Prolia for 3 years with no side effects. My spine improved & is now in the normal range. I’ve continued to lose bone mass in my hips & they are -3.2.
My Dr recommends Evenity but I am reluctant. Tymlos & Forteo are not covered by Medicare & my copay under my prescription plan is over $1k a month. I don’t qualify for assistance. I’ve added more exercise ( weight vest & other stuff) & am staying on Prolia for now. I’m 71 & fit. Very active.

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I recommend watching this video about Prolia:
Combined and Sequential Approaches to Osteoporosis Therapy - Bing video

You should not do Forteo or Tymlos after Prolia. Getting off Prolia is a big risk in terms of rapid bone loss and increased fracture risk. Evenity might be okay- check the video on this and with your doc. Most do Reclast or alendronate after Prolia.

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@windyshores

I recommend watching this video about Prolia:
Combined and Sequential Approaches to Osteoporosis Therapy - Bing video

You should not do Forteo or Tymlos after Prolia. Getting off Prolia is a big risk in terms of rapid bone loss and increased fracture risk. Evenity might be okay- check the video on this and with your doc. Most do Reclast or alendronate after Prolia.

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Too late to edit! Just want to make clear that the paragraph below that I posted above is a summary of the video's message on Prolia and follow-up, not medical advice from me!

"You should not do Forteo or Tymlos after Prolia. Getting off Prolia is a big risk in terms of rapid bone loss and increased fracture risk. Evenity might be okay- check the video on this and with your doc. Most do Reclast or alendronate after Prolia."

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@gulfcoastwoman

I’ve been on Prolia for 3 years with no side effects. My spine improved & is now in the normal range. I’ve continued to lose bone mass in my hips & they are -3.2.
My Dr recommends Evenity but I am reluctant. Tymlos & Forteo are not covered by Medicare & my copay under my prescription plan is over $1k a month. I don’t qualify for assistance. I’ve added more exercise ( weight vest & other stuff) & am staying on Prolia for now. I’m 71 & fit. Very active.

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My mother was on Prolia and her only side effect was loosing all of her teeth, some of them being expensive as many were artificial teeth. She had extensive dental work done over the decades. She was 101 when the doctor ordered Prolia for her.

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@sarahstuart

My mother was on Prolia and her only side effect was loosing all of her teeth, some of them being expensive as many were artificial teeth. She had extensive dental work done over the decades. She was 101 when the doctor ordered Prolia for her.

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How sad. My neighbor said the same thing. Scary these medicines are. My insurance won't cover it anyway. Sorry to hear about your Mom.

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