HAVING FUN WHILE CREATING NEW KNOWLEDGE?

The online statement from the practice of the retina doctor in question here:     

https://www.illinoisretina.com/providers/timothy-flood-md-facs/

"Taking care of patients who have retinal problems and helping them to relieve their anxiety over the health of their eyes is very rewarding.  Research is also important to me.  To be able to take the knowledge you have gained through a clinical trial and change the way physicians treat patients is very exciting. Here at Illinois Retina we're helping people, having fun doing it and creating new knowledge at the same time." 

Question from Your Editor:

Thank you, Dr. Timothy Flood!  Was it fun to tell me that my retinal condition was "because I was on Prolia" (a drug for osteoporosis) rather than because I had osteoporosis (which I later learned was the truth).

Was it fun to purvey this misinformation with the predictable result that I would believe that this drug for osteoporosis threatened my eyesight, with the further predictable result that my efforts to get off of it, in order to save my eyes, would leave me with multiple vertebral fractures and in pain, perhaps for the rest of my life, unable to travel, drive a car, or even visit with friends and family without pain?  Fun?  

I still cannot understand why this doctor could not have told me that my retinal condition was related to the osteoporosis itself, and not to the medication (Prolia) I needed to keep my bones from breaking!

I sincerely hope this "creates new knowledge" for all eye doctors, so that their patients will not risk having their active lives so painfully cut off as I have!

                                                       ###  

PLACEBOS, FROM THE NATIONAL GEOGRAPHIC

 Sunday, November 13, 2022

‌ ‌ ‌ ‌ FROM THE ARCHIVES‌ ‌ ‌

Unlocking the healing power of belief

Whether it takes the form of a touch of the Holy Spirit at a Florida revival meeting or a dip in the water of the Ganges, the healing power of belief is all around us. Now science is suggesting that regular religious services may in fact improve the immune system, decrease blood pressure, and add years to our lives. But it's not just religious faith that has the ability to make us feel inexplicably better.

https://www.nationalgeographic.com/magazine/article/healing-science-belief-placebo?rid=A926C9E93F8D798D1364E606C3406E42&cmpid=org=ngp::mc=crm-email::src=ngp::cmp=editorial::add=Health_20221113

https://www.nationalgeographic.com/magazine/article/healing-science-belief-placebo?rid=A926C9E93F8D798D1364E606C3406E42&cmpid=org=ngp::mc=crm-email::src=ngp::cmp=editorial::add=Health_20221113

Unfortunately my pain and anger are still at a level that I have a hard time applying this information.  

OSTEOPOROSIS, PROLIA AND THE RETINA; WHAT I AM LEARNING

Early in 2018 I sustained three painful vertebral fractures, two thoracic and one lumbar.  Based on a retinal doctor’s remark that I had macular degeneration  “because you are on Prolia,” I had delayed my Prolia shot, hoping to “wean” myself from this drug that I now believed -- based on what this eye specialist had told me -- threatened my eyesight.   

Only later, after the damage was done, leaving me with a flood of pain, did I learn that the macular degeneration was associated with osteoporosis, not with Prolia! 

Why that retina doctor couldn't have simply said: "Your macular degeneration is related to your osteoporosis," I will never know.  

Predictably, I suffered three painful vertebral fractures, two thoracic and one lumbar.  Now, after years of physical therapy and exercise to gain some mobility and build core muscles (which can never adequately replace vertebral bones),  I can get around a little — albeit unsteadily and in pain.  

I’m sad and angry to miss travel I’d anticipated in retirement.  And as 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. 

I should add: I asked an old friend, a retired ophthalmologist who had serve for  years as a research director 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 colleagues at this flagship research agency and returned with the news that there was nothing reliable suggesting a causal relationship between Prolia and macular degeneration. The references she found from credible sources noted connections between macular degeneration and osteoporosis itself. 

For this reason, I believe it might be safer for anyone involved with eye conditions to understand that while macular degeneration may be related to osteoporosis, it is not likely because of Prolia. 

 Written November 5, 2022                                              

                                      ###

IT'S MY BACKBONE; I'LL CRY IF I WANT TO!

Whatever date this is posted at, I am writing this on Tuesday evening,  November 8, 2022.   

This morning was my regularly scheduled Prolia shot at Northwestern Medicine. 

While the pain from the broken vertebrae has diminished somewhat,  I very much appreciated my son's support getting me there and home!  

But my anger still burns when I think of how totally unnecessary these years of pain have been, and all that I have missed, because of the careless words of  the retina specialist, whom I shall call "Dr. Timothy Deluge," who told me that my eye condition (macular degeneration) was "because I was on Prolia."   

Couldn't he get the word "osteoporosis" out of his medically-trained, specialist-honed mouth?  Were there just too many syllables for his valuable time?  Or did he really not know the difference between "having osteoporosis" and being "on Prolia?"

My attempt to stop Prolia because of this inexcusably erroneous information resulted in at least three vertebral fractures, leaving me in tremendous pain for years.  

I am still unable to enjoy the travel and other activities I so looked forward to in retirement.   Even driving a car was so dangerously painful I let that go as well! 

Every reliable authority I consulted after this debacle told me that while there was a link between osteoporosis and macular degeneration, there was nothing reliable suggesting that the most widely used pharmaceutical for osteoporosis, Prolia, would have adverse effects on the eyes.  

Leslie Gore singing It's my Party and I'll Cry if I Want To reflects how I feel!    

https://youtu.be/m6KhXo13_H0

And read about it here!

https://en.wikipedia.org/wiki/It%27s_My_Party

Here is the parody I wrote about this in 2018 when this first happened!   It's based on Leslie Gore's 1963 classic!  

Nobody knows where my backbone has gone,

It was once strong and fine

Then my insides collapsed with a groan

And I’ve lost a lot of my spine!

It’s my backbone I’ll cry if I want to, cry if I want to, cry if I want to,   

You would cry too if it happened to  you!

My ribs are crushing my iliac crest,

My belly is way out to here,

Can't stand or sit, I just need to rest, 

And the pain is making me swear!

Why in the hell did I miss that damned shot?

That’s where this mess got it’s start!

All this has left me tied up in a knot, 

My life is falling apart!

It’s my backbone I’ll cry if I want to, cry if I want to, cry if I want to,   

You would cry too if it happened to  you!

                                             ###

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!  

                                          ###

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!  

                                           ###

                   

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.  

                                           ###

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! 

                                          ~~~~~ 

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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