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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sue225 | @sue225 | Mar 4, 2020
In reply to @sewcouture "Hi, Do NOT start this drug. It has been the worst experience. The side effects are..." + (show)
@sewcouture

Hi,
Do NOT start this drug. It has been the worst experience. The side effects are terrible! I have lost 1/4 of my hair, my legs ache all the time, and before this drug I was in the top 5% healthiest people in this country. Not anymore thanks to it. Remember, this drug is the same one they use to treat bone cancer and therefore contains the same chemotherapy chemicals. I had a special consultation with the endocrinologist and will return to my calcium and ergocalciferol (Vitamin D). Do your own research and remember that all of the osteoporosis drugs contain some chemo chemicals. Also, exercise and keep active. I wish I had never heard of any osteoporosis drugs. Good luck, K

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@sewcouture which drug caused these side effects (Prolia, Reclast, Fosamax)?

REPLY
butch24350 | @butch24350 | Mar 4, 2020
In reply to @mslw "I am sorry to read about your fractured femurs....wishing you a good recovery. Please let us..." + (show)
@mslw

I am sorry to read about your fractured femurs....wishing you a good recovery. Please let us know how long you were on Fosomax.
Thanks!

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Unfortunately I was on it on and off since 2005. My physicians kept retiring and the new ones never ask me how long I had taken it. Although I read the insert multiple times I never realize there was a timeframe involved.
I have been taking calcium and D3 as well and a multivitamin. I thought I was doing everything right.

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1 reply
sue225 | @sue225 | Mar 4, 2020
In reply to @butch24350 "Unfortunately I was on it on and off since 2005. My physicians kept retiring and the..." + (show)
@butch24350

Unfortunately I was on it on and off since 2005. My physicians kept retiring and the new ones never ask me how long I had taken it. Although I read the insert multiple times I never realize there was a timeframe involved.
I have been taking calcium and D3 as well and a multivitamin. I thought I was doing everything right.

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@butch25350 my husband, the lawyer, said to me, after I told him that one cant just stop taking Prolia without a backup plan to prevent rebound fractures, "Were you asked to sign anything before being prescribed this (to the effect that you understand what might happen and are okay with that). The same could be said for Fosamax's potential to cause femur fractures.

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1 reply
JK | @contentandwell | Mar 4, 2020
In reply to @sue225 "@lelia oh this is just awful. I have done some research on Reclast. It's bad. I..." + (show)
@sue225

@lelia oh this is just awful. I have done some research on Reclast. It's bad. I have the worst g.i. tract and I dont think I can take much more aggravation. This last year has been extremely unpleasant. I am looking forward to month six of being on this 3rd injection because that's when I started feeling close to normal on injection 2. Your breathing side effect : how horrible. I have been a drug sensitive person most of my adult life: Reclast does scare me. G.I. side effects are listed but both my doctor and the fellow sitting in on my apptmnt said no g.i. side effects! Thanks for sharing.

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@sue225 Thanks for the info you have posted about being on prolia. This is such a difficult and confusing situation when you need to be on a drug for osteoporosis. I do plan to take the drug route but am still deciding which drug. I may be limited due to being on immunosuppressants. For instance, if as @lelia has commented prolia "hijacks your immune system" that would probably be off limits for me. I need to do more research and speak further to my endocrinologist.
JK

REPLY
2 replies
mslw | @mslw | Mar 4, 2020
In reply to @sue225 "@butch25350 my husband, the lawyer, said to me, after I told him that one cant just..." + (show)
@sue225

@butch25350 my husband, the lawyer, said to me, after I told him that one cant just stop taking Prolia without a backup plan to prevent rebound fractures, "Were you asked to sign anything before being prescribed this (to the effect that you understand what might happen and are okay with that). The same could be said for Fosamax's potential to cause femur fractures.

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Assume the pharmaceutical companies would make it an uphill battle - or impossible - to sue, but one could inquire.

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1 reply
sue225 | @sue225 | Mar 4, 2020
In reply to @contentandwell "@sue225 Thanks for the info you have posted about being on prolia. This is such a..." + (show)
@contentandwell

@sue225 Thanks for the info you have posted about being on prolia. This is such a difficult and confusing situation when you need to be on a drug for osteoporosis. I do plan to take the drug route but am still deciding which drug. I may be limited due to being on immunosuppressants. For instance, if as @lelia has commented prolia "hijacks your immune system" that would probably be off limits for me. I need to do more research and speak further to my endocrinologist.
JK

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@contentandwell you'll see when you read up on Prolia (Amgen's own site)that it there is a higher incidence ofyou infections (ear, sinus, bladder). Prolia does affect the immune system. Hopefully, your doctor will take everything into consideration and prescribe what is best for you.

REPLY
1 reply
sue225 | @sue225 | Mar 4, 2020
In reply to @mslw "Assume the pharmaceutical companies would make it an uphill battle - or impossible - to sue,..." + (show)
@mslw

Assume the pharmaceutical companies would make it an uphill battle - or impossible - to sue, but one could inquire.

Jump to this post

@butch25350 I wasnt really thinking about sueing (although one wonders down the road with all these fractures if someone won't). I just think the patient needs a clear understanding from the outset about potential outcomes. I didnt have that many choices. I picked the one that scared me least:)

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mslw | @mslw | Mar 4, 2020

A lawsuit gets attention and, unfortunately, may be the only way to change a particular injustice. Very few people enjoy suing, but some patients on this site were not given a clear understanding of potential outcomes by their own doctors. They might benefit from a consultation with a medical malpractice attorney.
(I am not a lawyer or victim of malpractice re: osteo meds, but if my doctor had not warned me..., I would, at least, contact the doctor and his/her state medical association to prevent the same thing from happening to others.)

REPLY
JK | @contentandwell | Mar 4, 2020
In reply to @sewcouture "Hi, Do NOT start this drug. It has been the worst experience. The side effects are..." + (show)
@sewcouture

Hi,
Do NOT start this drug. It has been the worst experience. The side effects are terrible! I have lost 1/4 of my hair, my legs ache all the time, and before this drug I was in the top 5% healthiest people in this country. Not anymore thanks to it. Remember, this drug is the same one they use to treat bone cancer and therefore contains the same chemotherapy chemicals. I had a special consultation with the endocrinologist and will return to my calcium and ergocalciferol (Vitamin D). Do your own research and remember that all of the osteoporosis drugs contain some chemo chemicals. Also, exercise and keep active. I wish I had never heard of any osteoporosis drugs. Good luck, K

Jump to this post

@sewcouture Which drug are you referring to?
If you want to direct a response to a particular posting then you can click on the reply under it and it will show the post it is a response to. If you use the @ with the person's Connect name as I did at the beginning of this message it will let that person know that you have responded to them.
JK

REPLY
JK | @contentandwell | Mar 4, 2020
In reply to @sue225 "@contentandwell you'll see when you read up on Prolia (Amgen's own site)that it there is a..." + (show)
@sue225

@contentandwell you'll see when you read up on Prolia (Amgen's own site)that it there is a higher incidence ofyou infections (ear, sinus, bladder). Prolia does affect the immune system. Hopefully, your doctor will take everything into consideration and prescribe what is best for you.

Jump to this post

@sue225 She has suggested Reclast as did an endocrinologist I see for my diabetes and hypothyroidism. I just hate the thought of something that could negatively affect me for a year.
JK

REPLY
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