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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callalloo | @callalloo | Apr 22, 2022
In reply to @sue225 "You can get these spinal fractures if you delay getting your prolia dose for as little..." + (show)
@sue225

You can get these spinal fractures if you delay getting your prolia dose for as little as 2 mos. You must get an i n jection every 6-7 months. If you want to stop prolia you MUST transition to another drug (e g. Reclast). The doctor should advise you about this prior to starting Prolia. Amgen does have a warning about this in the insert in the box the injection comes in.

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That matches with my endocrinologist current recommendation too.

The problem with such a new drug is that people can be informed about the risks when they start it but never hear about later-discovered risks (aka ex post facto post-approval adverse effects yet to be added to package insert info). It pays to check for the newest package insert language from time to time as they get updated when the FDA requires it.

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jjmarks | @jjmarks | Apr 25, 2022
In reply to @kathy2016 "Thank you for your response.I have 3 doctors involved. Due to all my conditions my doctor..." + (show)
@kathy2016

Thank you for your response.I have 3 doctors involved. Due to all my conditions my doctor is stating he does not want Prolia injected in me due to the side effects.I have all side effects. I'm so concerned in pain,numbness,falling, major depression,swelling,and can't remember what day it is. They just keep adding more meds.I feel no difference.Im 59 and I have had enough fatique,feeling bad,doctors,therapy. I'm lost, I have no support till I seen this group. Should I fall, I get worried who what and when someone would notice! I'm to young for all this,fingers hands numb,can't stand long.This all started by looking into me having MS. It has become a nightmare! I'm upset daily.And looking at the drugs they want to inject,I would hope at one point they would show me the images of my spine and lesions on my brain.Its something new all the time. I am having my 3MRI this morning at another hospital??? Don't get it.Havent worked for 2 yrs,and lost everything,home is next.SSD hearing is feb2018. I've been denied,so I had to hire a laywer.Doctors said no work,what is a human to do? It's just me and scared to death!

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Hello, my name is Joanie. I just joined the group, I feel so bad for you. I'm also going through alot of medical stuff and yes it's depressing. If you read the side effects of all the drugs we take.. I wouldn't be on it , but I have to. I hope you get all you need and stay strong. If you need to talk send me a message.

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renay110 | @renay110 | Apr 26, 2022

i was on Fosamax for 9 years and gave myself Forteo shots for 2 years. I had my 1st prolia shot in October and was due for my 2nd one in April. Since then I had an artificial aortic valve in January. The side effect sheet the rhematologist gave me in October for Prolia did not mention endocarditis (infection of heart valve) but I discovered it on the Prolia web page. My cardiologist did not know about it. I called my rhematologist and she suggested I go back on Fosamax since I didn't have any side effects from that. I couldn't go back on Forteo since you can only be on it for 2 years. She said since I already had one shot of Prolia I had to be on something.

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2 replies
callalloo | @callalloo | Apr 26, 2022
In reply to @renay110 "i was on Fosamax for 9 years and gave myself Forteo shots for 2 years. I..." + (show)
@renay110

i was on Fosamax for 9 years and gave myself Forteo shots for 2 years. I had my 1st prolia shot in October and was due for my 2nd one in April. Since then I had an artificial aortic valve in January. The side effect sheet the rhematologist gave me in October for Prolia did not mention endocarditis (infection of heart valve) but I discovered it on the Prolia web page. My cardiologist did not know about it. I called my rhematologist and she suggested I go back on Fosamax since I didn't have any side effects from that. I couldn't go back on Forteo since you can only be on it for 2 years. She said since I already had one shot of Prolia I had to be on something.

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I hate to hear about a patient (client and consumer as well) finding out known adverse effects after the fact and not even from the prescribing physician! This should never, ever happen but, until that wishful day, we have no option but to double- or triple-check on recommended drugs, or protocols, for everything. I use a pharmacist who's been in practice for over 30 years and has seen a plethora of wonder drugs fly high then crash-and-burn, leaving people damaged and plaintiffs in class-action lawsuits.

There have been several occasions when I've asked him about an older med for a condition, something that's stood the test of time, and actually works better but younger doctors have never heard of....younger doctors being relentlessly marketed to by the pharmaceutical industry that has zero interest in meds it cannot patent and own the market for. So there is a real pharma knowledge gap among the newer doctors. Caveat emptor.

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windyshores | @windyshores | Apr 27, 2022
In reply to @renay110 "i was on Fosamax for 9 years and gave myself Forteo shots for 2 years. I..." + (show)
@renay110

i was on Fosamax for 9 years and gave myself Forteo shots for 2 years. I had my 1st prolia shot in October and was due for my 2nd one in April. Since then I had an artificial aortic valve in January. The side effect sheet the rhematologist gave me in October for Prolia did not mention endocarditis (infection of heart valve) but I discovered it on the Prolia web page. My cardiologist did not know about it. I called my rhematologist and she suggested I go back on Fosamax since I didn't have any side effects from that. I couldn't go back on Forteo since you can only be on it for 2 years. She said since I already had one shot of Prolia I had to be on something.

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I thought Forteo's two year time limit had been lifted.

Evenity is another option.

We don't know your DEXA scores so it is hard to comment....

Did you have endocarditis on Prolia, or are you afraid you could have it?

After 9 years on Fosamax, I wonder if you are at risk for side effects from brittle bones, such as aytpical fractures. Interesting that they put you on Prolia, which also suppresses turnover and over time may cause the same issues.

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1 reply
renay110 | @renay110 | Apr 27, 2022
In reply to @windyshores "I thought Forteo's two year time limit had been lifted. Evenity is another option. We don't..." + (show)
@windyshores

I thought Forteo's two year time limit had been lifted.

Evenity is another option.

We don't know your DEXA scores so it is hard to comment....

Did you have endocarditis on Prolia, or are you afraid you could have it?

After 9 years on Fosamax, I wonder if you are at risk for side effects from brittle bones, such as aytpical fractures. Interesting that they put you on Prolia, which also suppresses turnover and over time may cause the same issues.

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i didn't have endocardiitis. i had an artificial heart valve put in January 12. The surgeon told me to watch for endocarditis. i am aware of it because my father contracted it years ago after his mitral valve was replaced. He was on IV's for 3 weeks in local hospital treating him for wrong bacteria infection and then 6 weeks IV;S in another hospital. 2 of my former coworkers husbands died from endocarditis after having their heart valves replaced. It can start as a strep throat. My left wrist is -3.9 Sometimes the pharmaceuticals companies push too many meds. When i watch tv in the evening there is 4 or 5 commercials peddling different drugs. Years ago it was toothpaste, deodorant and cars.

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3 replies
callalloo | @callalloo | Apr 27, 2022
In reply to @renay110 "i didn't have endocardiitis. i had an artificial heart valve put in January 12. The surgeon..." + (show)
@renay110

i didn't have endocardiitis. i had an artificial heart valve put in January 12. The surgeon told me to watch for endocarditis. i am aware of it because my father contracted it years ago after his mitral valve was replaced. He was on IV's for 3 weeks in local hospital treating him for wrong bacteria infection and then 6 weeks IV;S in another hospital. 2 of my former coworkers husbands died from endocarditis after having their heart valves replaced. It can start as a strep throat. My left wrist is -3.9 Sometimes the pharmaceuticals companies push too many meds. When i watch tv in the evening there is 4 or 5 commercials peddling different drugs. Years ago it was toothpaste, deodorant and cars.

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While no one wants loss of bone density anywhere, I'm assuming the important numbers are the ones suggesting hip and spine risks, right? A golfer friend had wrist surgery and found his wrist had 'low density but the surgeon said that that's not what she saw when she did the surgery so is unconcerned. I never had wrist bones evaluated, just the basic spine and femur neck.

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callalloo | @callalloo | Apr 27, 2022
In reply to @renay110 "i didn't have endocardiitis. i had an artificial heart valve put in January 12. The surgeon..." + (show)
@renay110

i didn't have endocardiitis. i had an artificial heart valve put in January 12. The surgeon told me to watch for endocarditis. i am aware of it because my father contracted it years ago after his mitral valve was replaced. He was on IV's for 3 weeks in local hospital treating him for wrong bacteria infection and then 6 weeks IV;S in another hospital. 2 of my former coworkers husbands died from endocarditis after having their heart valves replaced. It can start as a strep throat. My left wrist is -3.9 Sometimes the pharmaceuticals companies push too many meds. When i watch tv in the evening there is 4 or 5 commercials peddling different drugs. Years ago it was toothpaste, deodorant and cars.

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Years ago it was also cigarettes, now it's chemo drugs for lung cancer, sigh.

REPLY
windyshores | @windyshores | Apr 27, 2022
In reply to @renay110 "i didn't have endocardiitis. i had an artificial heart valve put in January 12. The surgeon..." + (show)
@renay110

i didn't have endocardiitis. i had an artificial heart valve put in January 12. The surgeon told me to watch for endocarditis. i am aware of it because my father contracted it years ago after his mitral valve was replaced. He was on IV's for 3 weeks in local hospital treating him for wrong bacteria infection and then 6 weeks IV;S in another hospital. 2 of my former coworkers husbands died from endocarditis after having their heart valves replaced. It can start as a strep throat. My left wrist is -3.9 Sometimes the pharmaceuticals companies push too many meds. When i watch tv in the evening there is 4 or 5 commercials peddling different drugs. Years ago it was toothpaste, deodorant and cars.

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What are your hip and spine scores? With spine at -3.9 I spontaneously fractured three vertebrae. That score would require bone-growing drugs like Tymlos, Forteo or Evenity, I think. There is no longer a two year time limit for Forteo.

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