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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@dianefromkeywest

I am searching for the same answers. I read about the drug and am so concerned about the possible side effects. I am 70 and I just had. DXA scan that is troubling. I am very fit, eat fairly healthy, and exercise daily but my mom- 93 also has a history of fractures. I have 2 that I did not know so had.
I am most concerned with rapid heartbeat as I have PVCs already and risk of skin infection but there are so many side effects listed. Still, I feel Concerned about fractures and my high risk. If you have any feedback to help my decision, I will be so relieved. I feel like I am deciding to inject something into my body with possible health risks but to do nothing is also risky.

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I have had three prolia injections and I have a history of pvcs and a ventricular arrythmia. My arrythmia is controlled with a betablocker and the prolia has caused no heart rhythm side effects. I chose not to take Forteo which was my endocrinologist's first choice because I had read that Forteo caused rapid heartbeat.

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I have had at least 6 injections of PROLIA, the first was without side effects. Subsequently, I have struggled with pain in my back and legs .
This past spring I developed PMR , ( was diagnosed by a rheumatologist). My blood tests were normal so it was not understood how I could have PMR.
I will not be taking PROLIA injections any longer , as I believe this medication contributed to my PMR.
Our grandmothers never took any of these medications and they did just fine .

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@sidsell1

I have had at least 6 injections of PROLIA, the first was without side effects. Subsequently, I have struggled with pain in my back and legs .
This past spring I developed PMR , ( was diagnosed by a rheumatologist). My blood tests were normal so it was not understood how I could have PMR.
I will not be taking PROLIA injections any longer , as I believe this medication contributed to my PMR.
Our grandmothers never took any of these medications and they did just fine .

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Please axplain, what is PMR? The significance of a negative test for it? I am really interested in this topic, I can live with the aches and pains. I have been estrogen deficient for 15 years due to breast cancer. I have had multiple breaks and I am only 53, so treating my osteoporosis is very important, but it seems the risk of bigger problems is starting to mount. Thank you for being here.

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@hopeful33250

Hello @hilsy,

I appreciate your sharing about the new drug, Evenity. All of us with bone-thinning problems look forward to hearing of new drugs to treat this problem.

As I had not heard about Evenity previously, I researched a little bit and found this information on drugs.com. Here is the link, https://www.drugs.com/nda/evenity_190121.html. The manufacturer also has information available but often that is harder for a lay-person to understand.

Here is a link, however, to a press release regarding the drug, https://www.amgen.com/media/news-releases/2019/04/fda-approves-evenity-romosozumabaqqg-for-the-treatment-of-osteoporosis-in-postmenopausal-women-at-high-risk-for-fracture/.

@hilsy, are you asking about this drug for yourself or for a family member?

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In 2 days I go in for my second set of shots of Evenity. Similar side effects to Forteo and other osteoporosis meds. It does carry a black label warning because of stroke and cardiac problems. So far I have had no effects other than the usual constant aches and pains.
Hopefully this one works well enough I can have my back surgery next year.

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Have you read the University of British Columbia Canada and European Study Results ? All the best.

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@auntieoakley

Please axplain, what is PMR? The significance of a negative test for it? I am really interested in this topic, I can live with the aches and pains. I have been estrogen deficient for 15 years due to breast cancer. I have had multiple breaks and I am only 53, so treating my osteoporosis is very important, but it seems the risk of bigger problems is starting to mount. Thank you for being here.

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@auntieoakley I wanted to jump in here . I have had osteopenia for yrs, now my bones are getting thinner so Dr. suggested a liquid calcium which I take everyday. I get it from Amazon it is called Bone Meal Powder and has calcium, Magnesium, and Phosphorus in it I already take D3 My hip that use to hurt when I slept on it doesn't anymore like it use to . Good luck . I don't have PMR so cant voice to that .

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I have been on denusamab for a year and a half, I recently read about the rebound. I have some aches and pains but it is tolerable. I don’t want another incident of many fractures at once. The last one was really brutal. I am trying to make some informed choices, but it is difficult sometimes to get all the information.

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@sidsell1

I have had at least 6 injections of PROLIA, the first was without side effects. Subsequently, I have struggled with pain in my back and legs .
This past spring I developed PMR , ( was diagnosed by a rheumatologist). My blood tests were normal so it was not understood how I could have PMR.
I will not be taking PROLIA injections any longer , as I believe this medication contributed to my PMR.
Our grandmothers never took any of these medications and they did just fine .

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@sidsell1 Our grandmothers, or in this case my mother (she would be 112 if she was still alive) perhaps had better diets, and also did more physically and that kept their bones healthy. I have just discovered that I have osteoporosis so I have been doing a little research. Activity helps to make your bones stronger. Earlier generations worked harder and that activity probably did help. My mother did fracture her ribs though leaning over the meat counter to reach something at the back of the case. There are specific exercises that help to strengthen your bones. I just bought a book, "Strong Women, Strong Bones" that was recommended by my sister's doctor for my sister's osteopenia. I haven't gotten very in to it yet but I hope to build a new exercise regimen that will help me.
It's ironic, I fractured my femur so I suggested to my PCP that I have a bone scan, which was when I discovered that I have osteoporosis. Then I read that lack of activity leads to bone weakening. Well, with my fractured femur I can't do much so I suppose my bones must be getting worse every day.
JK

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@contentandwell

@sidsell1 Our grandmothers, or in this case my mother (she would be 112 if she was still alive) perhaps had better diets, and also did more physically and that kept their bones healthy. I have just discovered that I have osteoporosis so I have been doing a little research. Activity helps to make your bones stronger. Earlier generations worked harder and that activity probably did help. My mother did fracture her ribs though leaning over the meat counter to reach something at the back of the case. There are specific exercises that help to strengthen your bones. I just bought a book, "Strong Women, Strong Bones" that was recommended by my sister's doctor for my sister's osteopenia. I haven't gotten very in to it yet but I hope to build a new exercise regimen that will help me.
It's ironic, I fractured my femur so I suggested to my PCP that I have a bone scan, which was when I discovered that I have osteoporosis. Then I read that lack of activity leads to bone weakening. Well, with my fractured femur I can't do much so I suppose my bones must be getting worse every day.
JK

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Thanks for sharing this story. I will order the book and read it:-) I was on Prolia, unfortunately it made me very ill after each injection (2).
I also encountered monthly respiratory infections! I quit the Prolia with the approval of my doctor who pointed out a 2018 European study revealed Prolia can cause femur and spine fractures. I am a runner..or I was until August, when I couldn't walk on my right leg. MRI revealed impact fractures. Suspect was in fact Prolia! My grandmother like yours, ate well exercised and lived to 86. My favorite questions is, "What did our grandmothers do?" Thanks again for your insights.

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@llwortman Linda, I never used to check these discussions because I had no idea I had osteoporosis -- my PCP dropped the ball after I was diagnosed with osteopenia in January of 2014 and I never had another Dexa scan after my fracture occurred - I called and asked if I was due for one. Now that I know I have osteoporosis I am researching as much as I can so when I see a rheumatologist I will be somewhat informed. Is that the type of doctor you saw, a rheumatologist? I was very surprised when my PCP's office said I needed to see a rheumatologist.

It seems as if none of these bone medications are without some very real faults, we have to decide which are best for each of us, and hopefully have a really great doctor to help us through it. I know of at least one person who has osteoporosis but will not take a medication because of the side-effects but I am still recovering from my "minimally displaced fracture of the trochanter of L femur" so I know the pain involved in even a minor fracture like this and do not want that to happen again if at all possible. I have even read that 20% of the people with a hip fracture die within a year due to inactivity.

I thought I was doing all the right things, exercising, and eating well but I now know that I was at a fairly high risk because three of the drugs I take - levothyroxine, prednisone, and my immunosuppressant, sirolimus -- can contribute to weak bones, plus I have lost a very considerable amount of weight. I was basically a fracture waiting to happen, "the perfect storm".

Since you got off of Prolia, did you start taking a different drug?
JK

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