OSTEOPOROSIS, PROLIA AND THE RETINA: WHAT I LEARNED -- THE HARD WAY! ~~~~~~~~~~~~~~~
Background: Early in 2018 I sustained three painful vertebral fractures, two thoracic and one lumbar.
For some time I'd been treated for an eye condition called "wet macular degeneration" treated by injections into the eye of a medicine called "Eylea."
Having even a skilled and trusted retina specialist stick a needle into the eye is frightening. So understandably I wanted to know more about it and asked the retinal specialist why I had this retina condition.
His immediate answer: "Because you are on Prolia."
Prolia! The shot I received twice a year for osteoporosis!
I knew that fractures could occur if I did not get this shot on time, but the prospect of losing my eyesight if I stayed ON Prolia was even more frightening.
So based on the retina doctor's response, I delayed my upcoming Prolia shot, hoping to “wean” myself from this drug that I now believed threatened my eyesight.
Weeks after date of my “skipped” Prolia shot, I had a terrible backache -- worse than anything I had ever had in my life. The pain so bad I got a cab to the Northwestern ER where x-rays revealed three fractures: one lumbar, 2 thoracic. They sent me home with an Rx for pain pills that hardly made a dent in the terrific pain.
Only later, after this damage was done, did I learn that the macular degeneration was associated with the osteoporosis itself, and NOT with Prolia!
Why that retina doctor couldn't have simply said: "The macular degeneration is related to your osteoporosis," I will never know.
Now in November, 2022, after years of physical therapy and prescribed exercise to gain some mobility and build core muscles (which cannot adequately replace fractured vertebrae), I can get around a bit, albeit unsteadily and in pain.
I’m sad and angry to miss the travel I’d anticipated in retirement. But there was no way I could manage this with my shattered vertebrae.
And, because driving was dangerously painful, the car and driver’s license went too.
Likewise holiday get-togethers with family (all COVID-19 immunized and with masks as needed) will be painful if I can manage them at all.
And all because of the flood of disinformation I received from an eye specialist who certainly should have known better!
I should add: During this painful time I asked an old friend, LRD, a pediatric ophthalmologist with many years of clinical surgical and research experience at major medical centers and at the National Institutes of Health National Eye Institute, what she knew about the drug Prolia (denosumab) and macular degeneration.
She kindly reached out to respected colleagues at these flagship agencies and returned with the news that there was nothing reliable suggesting a causal relationship between Prolia and macular degeneration. References she found from credible sources noted links between macular degeneration and osteoporosis itself.
It might be well for eye doctors to consider that while macular degeneration may be related to osteoporosis, this condition is not likely because of Prolia.
Joan Levin, jdlevin@bright.net
Written November 12, 2022
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
From my blog, JoansBackboneDisaster. November, 2022
http://www.joansbackbonedisaster.com/
http://www.joansbackbonedisaster.com/2022/11/osteoporosis-prolia-and-retina-what-i.html