It has taken me a long time to figure this out. But now that I have, I want to make sure no one else in similar circumstances winds up as I did - in pain 24/7, unable to drive, travel as I used to, or enjoy many of the activities I so looked forward to in retirement -- because of medical misinformation.
I had been dealing with osteoporosis for quite some time, and had been on Prolia for this condition for several years.
But during this time I learned I had an eye problem.
My vision is not bad. I wear glasses for reading and I get periodic eye exams with an ophthalmologist. At one of these eye examinations the doctor told me I had a retinal condition: macular degeneration, and referred me to a retinal specialist.
The retinal specialist confirmed that I had dry macular degeneration in one eye and wet macular degeneration in the other -- a condition that could leave me blind!
The dry macular degeneration could be addressed with the AREDS vitamins available OTC at any drugstore.
The wet macular degeneration, however, had to be treated with periodic shots in the eye. Here, your arms and legs are strapped into a chair while the doctor sticks a needle in your eye with a drug - Eylea. I found this scary and unpleasant!
Naturally I asked the doctor why I had this condition. The answer: "Because you are on Prolia!"
I believed he was giving me the reason I had this eye condition, and that I should act on it, but doing so unleashed a flood of painful and debilitating consequences.
It turned out, as I later learned to my sorrow, that the retinal condition was NOT because I was on Prolia as this retinal doctor had told me. It was because I had osteoporosis!
But at the time, I believed (based on what this retina doctor had told me) that I had to make a choice between bones and eyes ---- and I opted for my eyes.
This is why I tried to get myself off Prolia. I thought if I could extend the time between shots that that fractures would be less likely.
Another retinal specialist later assured me that it was not the Prolia that had caused the macular degeneration. It was the osteoporosis itself!
But the damage had been done. By failing to get Prolia on time I sustained multiple vertebral fractures leaving me in great pain and greatly disabled.
Activities I looked forward to in retirement - travel, enjoyable times with friends and family, driving a car, and even going for a walk -- are now either impossible or very painful.
I force myself to walk as much as possible even when it is painful, and a physical therapist gave me some core exercises which I do as well.
But muscle is not a great substitute for bone! And I will live with the painful fractures sustained by acting upon this flawed medical information for the rest of my life!
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