Through this blog -- an unfolding account -- I share what happens when a trusted doctor gives a patient inaccurate or misleading information.
In this case, it was an eye specialist -- a retinal specialist actually -- who flooded me with totally erroneous information about why I had an eye condition called "macular degeneration."
When I asked this specialist why I had this eye condition, his answer was: "Because you are on Prolia!!" This is the drug I was prescribed for osteoporosis, to be injected by a bone specialist every six months.
Believing what this eye specialist (erroneously) told me, I tried to get off Prolia by delaying the appointment for my next shot. I thought I could perhaps "wean" myself off this drug without consequences. Bad idea! The result of my effort to save my eyes by getting off Prolia was several vertebral fractures that have left me with a flood of pain and disability to this day!
Only later did I learn that the osteoporosis drug Prolia had nothing to do with the eye condition. It was the osteoporosis itself that was the link!
But the dangerously inaccurate and definitely misleading information purveyed by a respected retinal specialist -- who should have known better -- was a major factor in destroying any hopes I might ever have had for the enjoyable retirement activities I so looked forward to during my working years.
As of this date, late in 2022, I have been living for over four years with the life-altering pain and disability resulting from that inaccurate information purveyed by a retinal specialist who should have known a lot better!
Prolia (the registered trademark name for the drug denosumab, manufactured by Amgen, Inc. and wrongly cited by the doctor here as being responsible for my eye condition), is a monoclonal antibody administered by injection every six months for the treatment of osteoporosis.
There is strong evidence to suggest that even short delays in this six month schedule may result in fractures such as I experienced.
There is strong evidence to suggest that even short delays in this six month schedule may result in fractures such as I experienced.
I had read the warnings about "not stopping Prolia without consulting a physician," and I had been on Prolia for years with no intention of stopping.
But it was the flood of erroneous information given to me by that retinal specialist about my eye condition that caused me to stop Prolia, leading to the painful fractures described herein.
This could have been entirely avoided! Instead of saying that the eye condition in question was because you are on Prolia, the doctor could simply have said because you have osteoporosis.
This was essentially the opinion of every medical expert I consulted on the subject.
I share this in hopes that it may spare others unnecessary pain!
Please note that this blog is a work in progress. I will continue to add to it and also make revisions mostly for the sake of currency, brevity and clarity.
This blog is therapeutic for me. It helps to get the poison of my anger out of my system, especially at the medical "expert" whose flood of spectacularly inaccurate words created such painful and permanent damage to the only body I will ever be given on this earth! I also hope it will warn others! However, I apologize for the length and repetitiveness of many of the posts.
Here, in this rather large nutshell, is how in just a few days I changed from an active 80 something going on 60, to a semi-invalid who feels like she is going on 120!
This totally unnecessary iatrogenic disaster might have been avoided by a few well placed words of warning. More prominent warnings by Amgen, Inc., the manufacturer of Prolia, might have saved me, and perhaps many others with similar eye conditions from a flood of pain and disability.
/////////////////////////////////////////////////////////////////
Here, in this rather large nutshell, is how in just a few days I changed from an active 80 something going on 60, to a semi-invalid who feels like she is going on 120!
This totally unnecessary iatrogenic disaster might have been avoided by a few well placed words of warning. More prominent warnings by Amgen, Inc., the manufacturer of Prolia, might have saved me, and perhaps many others with similar eye conditions from a flood of pain and disability.
I would like to see more easily obtainable, reliable information consumers about eye disorders that may be linked to osteoporosis.
The posts in this blog are mostly in reverse chronological order, newest first (this introduction excepted). They include my account of the effects of this totally avoidable situation that basically destroyed what I have every reason to believe would otherwise have been an active and reasonably pain free old age!
Here, for convenience, are links to a few more of the early posts about events setting the stage for the subsequent years of pain and disability.
http://www.joansbackbonedisaster.com/2018/07/getting-started-with-new-drug-short.html
and:
http://www.joansbackbonedisaster.com/2018/07/seduced-and-abandoned_5.html
The posts in this blog are mostly in reverse chronological order, newest first (this introduction excepted). They include my account of the effects of this totally avoidable situation that basically destroyed what I have every reason to believe would otherwise have been an active and reasonably pain free old age!
Here, for convenience, are links to a few more of the early posts about events setting the stage for the subsequent years of pain and disability.
http://www.joansbackbonedisaster.com/2018/07/getting-started-with-new-drug-short.html
and:
http://www.joansbackbonedisaster.com/2018/07/seduced-and-abandoned_5.html
But more than anything -- a modicum of common sense by a specialist eye doctor who surely knew better than what he told me -- could have spared me the flood of immeasurable pain and the physical loss, as well as any chance of enjoying activities I had planned for my retirement years.
###