1. < Osteoporosis & Bone Health

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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bonnieh218 | @bonnieh218 | Aug 11, 2019
In reply to @mlpprolia "Hello to all. I was diagnosed with stage 1 grade 1 er positive breast cancer in..." + (show)
@mlpprolia

Hello to all. I was diagnosed with stage 1 grade 1 er positive breast cancer in 2105. In addition to radiation I was prescribed anastrolzole and then fosamax to offset the bone density risk from the anastrozle as I had osteoporosis in hip. After 6 months on fosamax with some digestive issues my doctor switched me to prolia injections and I agreed based on the understanding that the prolia would leave my system permanently when I ceased it. I fully intended to cease it within several years. After 3 years on prolia and and anastozole I had such Terrible joint pain . In back and hip I could hardly walk. After stopping the anastozole I saw some improvement in joint pain . But still was in pain. That is when I realized the prolia must be part of the problem. At that point I decided to cease all these drugs but discovered the research on prolia discontinuation spinal fractures and consulted an endocrinologist. I am now moving from Prolia back to fosamax for 2 years to avoid the risk of spinal fractures due to discontinuation..... assuming I can tolerate the side effects of fosamax. . I am doing this only because I am fearful of the multiple spinal fracture risk which is permanently disabling as best I can tell. Anyone considering prolia must read the research on the multiple spinal fractures upon discontinuation. . Just google prolia discontinuation and you will find many research articles and case summaries. If you take prolia there is no clear exit strategy. I am now very cautious about any of these drugs. Undoubtedly they are very useful for patients who have severe risk of bone breaks at outset. However I am 69 have never broken a bone other then high school basketball finger break and my parents lived to 91 mother and 95 father still living neither of whom had ever broken a bone. I do not believe my fracture risk justifies these kinds of drugs nor the risks of the adverse effects. Yet now I am at risk due to the drug......... please get well informed before you consider this drug and be SURE it is right for you.

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@mipprolia my doctor wants to start me on prolia. I read all about it. Had a dental appointment and mentioned this to my dentist. She is very much opposed to this for me. I have a tooth that might need to be eventually pulled. She says that by taking Prolia, my jaw bone where a tooth was pulled would not heal.

REPLY
2 replies
JK | @contentandwell | Aug 11, 2019
In reply to @mlpprolia "Hello to all. I was diagnosed with stage 1 grade 1 er positive breast cancer in..." + (show)
@mlpprolia

Hello to all. I was diagnosed with stage 1 grade 1 er positive breast cancer in 2105. In addition to radiation I was prescribed anastrolzole and then fosamax to offset the bone density risk from the anastrozle as I had osteoporosis in hip. After 6 months on fosamax with some digestive issues my doctor switched me to prolia injections and I agreed based on the understanding that the prolia would leave my system permanently when I ceased it. I fully intended to cease it within several years. After 3 years on prolia and and anastozole I had such Terrible joint pain . In back and hip I could hardly walk. After stopping the anastozole I saw some improvement in joint pain . But still was in pain. That is when I realized the prolia must be part of the problem. At that point I decided to cease all these drugs but discovered the research on prolia discontinuation spinal fractures and consulted an endocrinologist. I am now moving from Prolia back to fosamax for 2 years to avoid the risk of spinal fractures due to discontinuation..... assuming I can tolerate the side effects of fosamax. . I am doing this only because I am fearful of the multiple spinal fracture risk which is permanently disabling as best I can tell. Anyone considering prolia must read the research on the multiple spinal fractures upon discontinuation. . Just google prolia discontinuation and you will find many research articles and case summaries. If you take prolia there is no clear exit strategy. I am now very cautious about any of these drugs. Undoubtedly they are very useful for patients who have severe risk of bone breaks at outset. However I am 69 have never broken a bone other then high school basketball finger break and my parents lived to 91 mother and 95 father still living neither of whom had ever broken a bone. I do not believe my fracture risk justifies these kinds of drugs nor the risks of the adverse effects. Yet now I am at risk due to the drug......... please get well informed before you consider this drug and be SURE it is right for you.

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Hi, @mlpprolia and welcome to Connect.
Thanks for the good info, it sounds as if you have done some extensive research into these drugs. They are scary! It’s one of those things for which there does not seem as if there’s a good solution, as is true so for many pharmaceuticals.
I am recovering from a painful fracture of my upper femur, (“minimally displaced fracture of the greater trochanter of L femur”) and have a bone scan scheduled next month after which I suspect my PCP will want me on one of these drugs. :-(. Since a fracture can be permanently disabling I don’t want to risk that, but the side effects of these drugs are pretty bad. I definitely need to research the options if the scan indicates my bones need help.
JK

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1 reply
sue225 | @sue225 | Aug 11, 2019
In reply to @contentandwell "Hi, @mlpprolia and welcome to Connect. Thanks for the good info, it sounds as if you..." + (show)
@contentandwell

Hi, @mlpprolia and welcome to Connect.
Thanks for the good info, it sounds as if you have done some extensive research into these drugs. They are scary! It’s one of those things for which there does not seem as if there’s a good solution, as is true so for many pharmaceuticals.
I am recovering from a painful fracture of my upper femur, (“minimally displaced fracture of the greater trochanter of L femur”) and have a bone scan scheduled next month after which I suspect my PCP will want me on one of these drugs. :-(. Since a fracture can be permanently disabling I don’t want to risk that, but the side effects of these drugs are pretty bad. I definitely need to research the options if the scan indicates my bones need help.
JK

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My fear of losing my independence finally outweighed my fear of the dangers of Prolia (and most other drugs for that matter). There is not a perfect solution and there never will be.

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1 reply
Mentor
Chris, Volunteer Mentor | @auntieoakley | Aug 11, 2019
In reply to @bonnieh218 "@mipprolia my doctor wants to start me on prolia. I read all about it. Had a..." + (show)
@bonnieh218

@mipprolia my doctor wants to start me on prolia. I read all about it. Had a dental appointment and mentioned this to my dentist. She is very much opposed to this for me. I have a tooth that might need to be eventually pulled. She says that by taking Prolia, my jaw bone where a tooth was pulled would not heal.

Jump to this post

Both myself from very early menopause (breast cancer) and my husband from bone cancer(multiple myeloma), are on these types of bone strengtheners. Yes they do recommend that you get any dental work needed, completed before you begin. Especially extractions, to prevent issues with the jaw. But the flip side of that coin is compression fractures. My husband had two before he was diagnosed and it took the strongest man I know to his knees with a simple sneeze. I had multiple (more than 12) from a fall that should not have broken anything. Now I have steel plates and screws, and some pretty chronic low grade pain. Only you and your doctor can weigh the risk versus benefit of this. I wish you good health.

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ritafarmer | @ritafarmer | Aug 11, 2019
In reply to @bonnieh218 "@mipprolia my doctor wants to start me on prolia. I read all about it. Had a..." + (show)
@bonnieh218

@mipprolia my doctor wants to start me on prolia. I read all about it. Had a dental appointment and mentioned this to my dentist. She is very much opposed to this for me. I have a tooth that might need to be eventually pulled. She says that by taking Prolia, my jaw bone where a tooth was pulled would not heal.

Jump to this post

This is a risk with all of the osteoporosis drugs. It's called osteonecrosis of the jaw
The best thing to do would be to pull the tooth and let it heal before starting the drug. However, one of my teeth broke while I was on one of the osteoporosis drugs. It had to be pulled so that the tooth could be replaced with two crowns and a bridge. Even though it was a small tooth, my dentist sent me to an oral surgeon. I think that the oral surgeon was better informed about the risks. He gave me actual probability, which was actually very low. He then pulled the tooth, and I had no problems.

REPLY
1 reply
sue225 | @sue225 | Aug 11, 2019
In reply to @ritafarmer "This is a risk with all of the osteoporosis drugs. It's called osteonecrosis of the jaw..." + (show)
@ritafarmer

This is a risk with all of the osteoporosis drugs. It's called osteonecrosis of the jaw
The best thing to do would be to pull the tooth and let it heal before starting the drug. However, one of my teeth broke while I was on one of the osteoporosis drugs. It had to be pulled so that the tooth could be replaced with two crowns and a bridge. Even though it was a small tooth, my dentist sent me to an oral surgeon. I think that the oral surgeon was better informed about the risks. He gave me actual probability, which was actually very low. He then pulled the tooth, and I had no problems.

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I have asked my dentist about prolia and dental procedures and periodontist and the procedures are still being done. Some will tell you to delay your next prolia injection. There are so many people over a certain age on prolia and it's at this age that big dental problems occur.

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geronimo1 | @geronimo1 | Aug 11, 2019

My oncologist has recommended I start prolia injections. I’ve finished all my cancer treatment but have osteoporosis. I’m 65 and my teeth need fixing. I’ve heard you should have dental work done before starting prolia. Are there other alternatives for making your bones stronger?

REPLY
1 reply
ritafarmer | @ritafarmer | Aug 11, 2019
In reply to @geronimo1 "My oncologist has recommended I start prolia injections. I’ve finished all my cancer treatment but have..." + (show)
@geronimo1

My oncologist has recommended I start prolia injections. I’ve finished all my cancer treatment but have osteoporosis. I’m 65 and my teeth need fixing. I’ve heard you should have dental work done before starting prolia. Are there other alternatives for making your bones stronger?

Jump to this post

I believe that all of the osteoporosis drugs have a possible side effect of osteonecrosis of the jaw. This is only a concern if you are having teeth filled--not if you are having fillings, crowns, root canals, etc.

REPLY
3 replies
sue225 | @sue225 | Aug 11, 2019
In reply to @ritafarmer "I believe that all of the osteoporosis drugs have a possible side effect of osteonecrosis of..." + (show)
@ritafarmer

I believe that all of the osteoporosis drugs have a possible side effect of osteonecrosis of the jaw. This is only a concern if you are having teeth filled--not if you are having fillings, crowns, root canals, etc.

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The big concern is a dental implant.

REPLY
bonnieh218 | @bonnieh218 | Aug 11, 2019
In reply to @ritafarmer "I believe that all of the osteoporosis drugs have a possible side effect of osteonecrosis of..." + (show)
@ritafarmer

I believe that all of the osteoporosis drugs have a possible side effect of osteonecrosis of the jaw. This is only a concern if you are having teeth filled--not if you are having fillings, crowns, root canals, etc.

Jump to this post

@ritafarmer my dentist told me necrosis of the jaw is a problem for you if you need dental work done that would involve anything with the bone, like an extraction because your bone can’t heal after the extraction. I’ve had fillings and a root canal done and although I’m not taking any of these drugs now my endo doc wants me to start with Prolia. My dentist said no and that was because there will be the day when I have to have teeth pulled out, like the root canal tooth, and then the bone will not heal where the tooth was pulled. I have other teeth with no fillings or crowns and she said they would be affected in the same way should they ever be extracted.
I have been on Reclast for 5 years and now off of it for 3 years. In those three years I’ve had fillings and crowns done with no necrosis problems. So, I believe it’s not from just having fillings or crowns done. Hopefully I don’t need to have any teeth pulled, with fillings or not, and face the consequences. All the same, I am saying no to any more of these drugs.

REPLY
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