THE PAINFUL CONSEQUENCES OF FLAWED MEDICAL INFORMATION

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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WERE DRUGS FOR MY BONES HARMING MY EYES? OR WAS IT THE OSTEOPOROSIS?

As noted elsewhere on these pages:

 (http://www.joansbackbonedisaster.com/2021/08/whipsawed-between-two-specialists.html).  Because of what turned out to be a flood of dangerously inaccurate information that I was given by an eye specialist, I was concerned about the relationship between osteoporosis drugs (especially Prolia, which I am on) and the macular degeneration, an eye condition now being treated by a retinal specialist.     

A brief search turned up articles about relationships between Prolia and macular degeneration, and other osteoporosis drugs (bisphosphonates) in this context as well.    

https://www.ncbi.nlm.nih.gov/pubmed/32026309

and an article about an upcoming NIH study

Prolia and Macular degeneration - a phase IV clinical study of FDA data

https://www.ehealthme.com/ds/prolia/macular-degeneration/

This article looks at relationships between Pfizer BioNTech COVID Vaccine and Macular Degeneration:

https://www.ehealthme.com/vs/pfizer-biontech-covid-vaccine/macular-degeneration/

 

Mainly I learned that macular degeneration is related to osteoporosis itself, rather than to drugs (such as Prolia) used to treat osteoporosis (as this retinal specialist had told me).  

But I still searched the medical literature as well as I could to see if Prolia itself was threatening my eyesight. There was not much information specifically raising this point.    I could not find much.   

https://iovs.arvojournals.org/article.aspx?articleid=2698607

This article also appears in another journal, Investigative Ophthalmology & Visual Science, for August 2018. 

Here are the conclusions: 

"Conclusions: Our findings suggest that osteoporosis plays a role in AMD development in postmenopausal women.”

Having read 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,  Based on prior experience with this hotline perhaps I can believe her.)

I'll keep questioning, and will report on these pages if I learn more.     

Also see:

https://connect.mayoclinic.org/discussion/osteoporosis-prolia-and-macular-degeneration/        

                   

  I have commented at the above website as joan26  

Also see:

Association Between Osteoporosis and Age-Related Macular Degeneration: The Korea National Health and Nutrition Examination Survey

Tae Keun Yoo 1, Soo Han Kim 2, Jiyong Kwak 1, Hong Kyu Kim 3, Tyler Hyungtaek Rim 1

https://pubmed.ncbi.nlm.nih.gov/30372730/    

Back to my own situation (which I also discuss elsewhere in this blog), I suffer to this day from the dangerously erroneous information I received from a doctor -- a retinal specialist -- who told me that my eye condition was "because you are on Prolia."   This misinformation, so carelessly delivered, created a flood of serious and painful difficulties for me. 

Based on this misinformation from someone who should have known better, and hoping to wean myself off this drug that I believed was threatening my eyesight, I delayed the next Prolia shot, and, as a direct consequence, suffered three painful vertebral fractures, two thoracic, one lumbar.  

Vertebral fractures cannot be set.  I was given a tight corset to wear and spent the next several months mostly in bed (also not healthy) because standing and walking were so painful.  I also got rid of my car as it was dangerously painful to drive. 

Today, years later, I am still in a good deal of pain.  The fractures have healed, albeit in a crooked way, but the pain is such that I can no longer safely drive a car.   I am just grateful that I can sit up now and walk a little without unbearable pain.

The travel and events with friends and family that I had looked forward to are sharply limited because of the pain from these totally unnecessary fractures. 

I still don't understand why the retinal specialist who erroneously told me that my macular degeneration was because I was "on Prolia" couldn't have simply answered my question about my macular degeneration by saying:  "Because you have osteoporosis."   

But this careless and inaccurate remark triggered a flood of events that left me in a lot of pain, rendering normal activity (driving a car, traveling, etc.) impossible. 

I only hope others in this retinal doctor's practice are not giving patients this dangerously inaccurate information!  

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MACULAR DEGENERATION OF THE RETINA: FROM OSTEOPOROSIS DRUGS OR FROM OSTEOPOROSIS ITSELF?

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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MY EYESIGHT AT RISK: A WORK IN PROGRESS

As if being lame from the sudden withdrawal of the osteoporosis drug Prolia discussed in other posts, I am learning more about how my eyesight may be at risk!

I have been diagnosed with a retinal disease, macular degeneration, in BOTH eyes.  In one eye the less serious dry macular degeneration, treated nutritionally, and in the left eye, the more advanced wet macular degeneration, now being treated with injections by a retinal specialist.

A retinal specialist told me that the osteoporosis drug Prolia was the culprit here, while Amgen maintained the macular degeneration was more likely associated with osteoporosis itself.  

This put me in mind of the verse from Rabbi Ben Ezra by Alexander Pope: 

Now, who shall arbitrate? 

Ten men love what I hate, 

Shun what I follow, slight what I receive; 

Ten, who in ears and eyes 

Match me: we all surmise, 

They this thing, and I that: whom shall my soul believe? 

I found myself in the same situation!

I generally tend to distrust remarks from drug companies, but it turns out that it was, in fact,  the inaccurate and misleading remark by the retinal specialist that unleashed this flood of events -- including three vertebral fractures -- leaving me with much pain and disability to this day!

I will report more as I learn more.  Here here are some links to what I've posted earlier. 

1) Prolia and Vision -- Must I Choose between Lame or Blind? 

http://www.joansbackbonedisaster.com/2021/05/lame-and-blind-revisited-eyes-have-it.html

This is about the relationship between Prolia (and other osteoporosis drugs as well as osteoporosis itself) and macular degeneration. 

2) Will I Have Vision or Bones in 2021.

http://www.joansbackbonedisaster.com/2020/03/will-i-have-any-vision-in-2020.html

This expands on the same frightening theme!

More as I learn more! 

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P.S. Note added August 2021: Please note that BONE specialists say the retinal situation is not because of the Prolia, and that the osteoporosis itself is responsible for the retinal issues.  

And it turns out that the comment regarding Prolia made by the retinal specialist that unleashed this flood of pain and disability was totally inaccurate.  But I suffer from this misinformation to this day.  I'll keep reporting as I learn more! 

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