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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butch24350 | @butch24350 | Jan 17, 2020
In reply to @contentandwell "@butch24350 You have been through a lot, for sure. I am surprised that you have so..." + (show)
@contentandwell

@butch24350 You have been through a lot, for sure. I am surprised that you have so many problems but just have osteopenia, not yet osteoporosis.
I am just beginning this miserable journey and have an appointment with an endocrinologist. My appointment is not until January so I haven't read as much as I intend to about the various drugs prescribed for osteoporosis. I thought the shots were done less frequently, either weekly or monthly, and of course Reclast is yearly.

@cherriann I do know of people who have not had any problems and have been helped by these drugs so I think it is worth a try once the right drug is chosen. As the drug commercials on TV always say after telling all of the possible side-effects, "your physician has decided that the benefits of the drug outweigh the possible side-effects". or something along those lines. I always try to remember too that generally people looking for answers are the people who have had problems. If everything is fine you have no reason to look for answers.

I will do my own research. Along with that and choosing a doctor in whom I have confidence I will proceed cautiously.
I had a "minimally displaced fracture of the greater trochanter of my L femur" in July. That is a somewhat minor fracture but the pain was substantial and the effect on my life was severe. I still have some pain that I think is from it although it could be bursitis pain. Obviously the last thing I want is to have another fracture, I am living in fear of winter with its icy parking lots.
JK

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Thank you. The only reason I had an orthopedic doctor when my journey began was because I started out with bursa. I’m going to a family physician at the end of January and we will discuss finding an endocrinologist. Thank you for your input I am leaning toward Prolia.

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1 reply
JK | @contentandwell | Jan 17, 2020
In reply to @butch24350 "Thank you. The only reason I had an orthopedic doctor when my journey began was because..." + (show)
@butch24350

Thank you. The only reason I had an orthopedic doctor when my journey began was because I started out with bursa. I’m going to a family physician at the end of January and we will discuss finding an endocrinologist. Thank you for your input I am leaning toward Prolia.

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@butch24350 since that last message from me I have seen an endocrinologist. She wants me to use reclast but I am still deciding. I don’t plan to do anything until April. We plan to do some traveling, and I have an MRI to check for cancer in April, so I want to wait until those things are done before I start a new drug.

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Mentor
Chris, Volunteer Mentor | @auntieoakley | Jan 18, 2020
In reply to @contentandwell "@mhalpin53 @auntieoakley Success stories are very important. Often the only people who come to these sites..." + (show)
@contentandwell

@mhalpin53 @auntieoakley Success stories are very important. Often the only people who come to these sites are those who have had problems so that sort of skews the facts and there really are more success stories than non-success stories. I have been told by two endocrinologists that the problems only occur in about 1 out of every 10,000 so the chance of me having a problem from one of the medications is far less than the chance of my having a problem from a fracture. I have not yet decided which medication I will go for. I think it has to be an injection/infusion type because the oral ones are rough on your esophagus and I have Barrett's Esophagus so that could be a problem.
JK

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My oncologist said about a tenth of one percent of people have reactions. I have talked to many women and men who are success stories.

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cireland | @cireland | Jan 18, 2020

I would need to see independent, verified reports before I accepted what any MD said. One of my questions is: Why aren't there easily available and reliable studies that show exactly how many people have severe reactions to these drugs that doctors are pushing on women.

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1 reply
Mentor
Chris, Volunteer Mentor | @auntieoakley | Jan 18, 2020
In reply to @cireland "I would need to see independent, verified reports before I accepted what any MD said. One..." + (show)
@cireland

I would need to see independent, verified reports before I accepted what any MD said. One of my questions is: Why aren't there easily available and reliable studies that show exactly how many people have severe reactions to these drugs that doctors are pushing on women.

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What you ask for is readily available on the drug manufacturer websites. The thing to understand is a large percentage of drug research these days is actually done by independent researchers and universities. Many double blind studies are done at multiple institutions by many different people. After the study has completed and it looks as if there will be a benefit to the people who need it, and therefore a market to which the drug companies can sell the product, this information is usually purchased from researchers who then use it to prove the point on their own websites or to develop the new drug depending on the research in question. The place to look for much of this information is on websites that are designed to educate you about spine health or bone health, advocacy groups, or the funding institutions like the NIH. In this way you can get the information without the manufacturers bent. I would also like to say, that not all doctors just want to give you more medicine to get paid more. I have a doctor that I trust without question who performs clinical trials, and more importantly cares about his patients. I hope you can find a doctor that deserves your trust in this way. Mayo Clinic and or Mayo trained doctors are a great place to start.

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2 replies
JK | @contentandwell | Jan 18, 2020
In reply to @auntieoakley "What you ask for is readily available on the drug manufacturer websites. The thing to understand..." + (show)
@auntieoakley

What you ask for is readily available on the drug manufacturer websites. The thing to understand is a large percentage of drug research these days is actually done by independent researchers and universities. Many double blind studies are done at multiple institutions by many different people. After the study has completed and it looks as if there will be a benefit to the people who need it, and therefore a market to which the drug companies can sell the product, this information is usually purchased from researchers who then use it to prove the point on their own websites or to develop the new drug depending on the research in question. The place to look for much of this information is on websites that are designed to educate you about spine health or bone health, advocacy groups, or the funding institutions like the NIH. In this way you can get the information without the manufacturers bent. I would also like to say, that not all doctors just want to give you more medicine to get paid more. I have a doctor that I trust without question who performs clinical trials, and more importantly cares about his patients. I hope you can find a doctor that deserves your trust in this way. Mayo Clinic and or Mayo trained doctors are a great place to start.

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@auntieoakley @cireland I don't know my endocrinologist well, I have just had one appointment with her, but my PCP also suggested Reclast and commented that he had recommended it for his own mother. Also, we have a very close friend who is a doctor, recently retired, and he too thought that Reclast was the best option for his wife, and he is not a big drug prescriber at all.
JK

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2 replies
kay71 | @kay71 | Jan 18, 2020

I had my last Prolia shot on May 6th, 2019 and am still trying to recover from ONJ!

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kay71 | @kay71 | Jan 18, 2020
In reply to @contentandwell "@mhalpin53 @auntieoakley Success stories are very important. Often the only people who come to these sites..." + (show)
@contentandwell

@mhalpin53 @auntieoakley Success stories are very important. Often the only people who come to these sites are those who have had problems so that sort of skews the facts and there really are more success stories than non-success stories. I have been told by two endocrinologists that the problems only occur in about 1 out of every 10,000 so the chance of me having a problem from one of the medications is far less than the chance of my having a problem from a fracture. I have not yet decided which medication I will go for. I think it has to be an injection/infusion type because the oral ones are rough on your esophagus and I have Barrett's Esophagus so that could be a problem.
JK

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When you are that one out of 10,000 then it’s too serious to take a chance on. I’ve been extremely sick ever since my last Prolia shot and will never take another. Just go google ONJ and see if you want to take a chance on that. I was also told the chances of that happening to me were slim to none! It’s the worse I have ever experienced and I’m not well yet! May never get well! Not worth it!

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2 replies
JK | @contentandwell | Jan 18, 2020
In reply to @kay71 "When you are that one out of 10,000 then it’s too serious to take a chance..." + (show)
@kay71

When you are that one out of 10,000 then it’s too serious to take a chance on. I’ve been extremely sick ever since my last Prolia shot and will never take another. Just go google ONJ and see if you want to take a chance on that. I was also told the chances of that happening to me were slim to none! It’s the worse I have ever experienced and I’m not well yet! May never get well! Not worth it!

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@kay71 it’s a very scary thing, something each patient has to give a lot of thought to and decide for themselves. Serious fractures are also scary. I had a minor fracture in July (minimally displaced) and i am still not yet back to where I was before then. I have heard of people with more serious fractures who never get back to where they were. Having osteoporosis not only makes a fracture more of a risk, but also impedes recovery.
I am 95% certain I will choose one of the options but I will be very scared of the possible effects.
JK

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1 reply
lioness | @lioness | Jan 18, 2020
In reply to @contentandwell "@kay71 it’s a very scary thing, something each patient has to give a lot of thought..." + (show)
@contentandwell

@kay71 it’s a very scary thing, something each patient has to give a lot of thought to and decide for themselves. Serious fractures are also scary. I had a minor fracture in July (minimally displaced) and i am still not yet back to where I was before then. I have heard of people with more serious fractures who never get back to where they were. Having osteoporosis not only makes a fracture more of a risk, but also impedes recovery.
I am 95% certain I will choose one of the options but I will be very scared of the possible effects.
JK

Jump to this post

@contentandwell

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