I have great respect for the doctors here at Illinois Retina. But my respect — and my trust —- left me with great pain, permanent disability, and, a sadly premature end to my active life!
When I was diagnosed with macular degeneration I had asked the retina doctor then treating me why I had this condition. His answer: “Because you are on Prolia!" I knew skipping a Prolia shot could mean broken bones!! But I was even more afraid of losing my eyesight. So I skipped the next Prolia shot!!!
The horrible result came quickly with an excruciating backache. I cabbed to the nearest ER where X-rays showed THREE recen vertebral fractures. They taped my back, but their pain pills could not stop the flood of pain. The University of Chicago Pain clinic offered only addictive narcotics, which frightened me.
Pain made driving hazardous so I sadly gave up my car. And the active life and travel I was so enjoying in retirement? Now impossible.
Pain made driving hazardous so I sadly gave up my car. And the active travel I so enjoyed in retirement? Now impossible. Even standing upright was painful!
I reached out to an old friend, an ophthalmologist, now retired from the National Eye Institute at National Institutes of Health in Bethesda, MD. She confirmed links between OSTEOPOROSIS and MACULAR DEGENERATION, but NOT between PROLIA and MACULAR DEGENERATION!
Had the retina doctor simply said "because you have osteoporosis" I'd have gotten my Prolia shots on time, my vertebrae would be ok, and my life would be reasonably normal.
I’m back on Prolia now, but the damage is forever. The Prolia doctor was shocked when I told her what happened. My vertebral X-rays resemble a child’s broken Tinker-Toy! The pain has decreased to where I can avoid habituating drugs, but it is always there when sitting or standing.
Driving was now hazardous, so I let my car and driver's license go. I try to be active as pain permits, and I do exercises prescribed by a physical therapist. But muscle cannot replace bone.
And the travel and other activities I had so eagerly looked forward to in retirement? Now impossible -- all because of a few misleading words from a respected retinal specialist whom I had the great misfortune to trust! I write this in hopes that this will not happen to anyone else!
Joan Levin jdlevin@bright.net 11/29/22.
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