In other posts I have mentioned macular degeneration of the retina which I have in both eyes.
Doctors have told me that this condition relates to osteoporosis.
Unfortunately, before I met these doctors who told me that the retina condition was related to osteoporosis itself, I acted on what the retina doctor who was then treating me told me.
He said I had this potential serious eye condition because I was on Prolia.
This (as I later learned to my sorrow) was totally incorrect information. But he was the expert and I believed him, and delayed my next Prolia shot, believing I could "wean" myself from this drug.
As a result, I sustained a flood of medical disasters leaving me disabled and in extreme pain. These include three terribly painful vertebral fractures that leave me deformed and in great pain to this day!
I should add that I later found articles associating macular degeneration with osteoporosis but none citing Prolia as the cause.
Here is an example in a journal from Korea:
Here is the citation for FULL TEXT:
https://iovs.arvojournals.org/article.aspx?articleid=2698607
This article also appears in another journal, Investigative Ophthalmology & Visual Science, for August 2018.
https://doi.org/10.1167/iovs.18-24059
Here are the conclusions:
"Conclusions: Our findings suggest that osteoporosis plays a role in AMD development in postmenopausal women."
in other words, these authors pointed more to the underlying condition, osteoporosis, rather than the drug prescribed to treat that condition.
Based upon this, on Thursday, August 5, 2021, I called Amgen's Prolia hotline: 1-800-772-6436, and asked if they had any information about Prolia and macular degeneration, or retina, or anything related. And said they had nothing. (Sometimes they say they have information but they'll send it to your doctor, but in this case the agent said she could find nothing and I based on prior experience I would tend to believe her.)
I'll keep questioning, and will report if I learn more.
But it is already quite clear to me that the flood of pain from the fractures I sustained by avoiding Prolia -- thinking that I had to make a choice between being lame or blind - were totally unnecessary and would never have occurred if that doctor had simply said that the eye issues were related to osteoporosis, rather than blaming the treatment (Prolia) for that condition.
I still do not know if the retina doctor really didn't know this, or if he was just careless with his words. But the damage is done and I will likely live with this flood of pain and deformity for the rest of my life.
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