A DIFFICULT DAY

Hallowe'en used to be fun!  Nothing is fun these days.   

I deal with the pain and the helplessness and anger -- and the loneliness -- as best I can.  

At least Mr. Jack O'Lantern understands!

     

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WHIPSAWED BETWEEN TWO SPECIALISTS!

This is about macular degeneration, a condition affecting the retina, the part of the eye that converts what comes into the eye into signals the brain can recognize.  

Elsewhere I've  discussed some the treatments -- AREDS vitamins for the "dry" macular degeneration I have in one eye, and SHOTS IN THE EYE of a drug, Eylea, administered by a retinal specialist for the more advanced "wet" macular degeneration in the other.   The latter I find quite scary!

This post is about the misinformation I received and what happened because of this!  

The misinformation came from the retina doctor who told me that I had this eye condition because I was on Prolia!    

This understandably left me with the impression that  continuing on Prolia could leave me blind!   

This in turn led me to believe that if I could cut back on Prolia I could still get some benefit to my bones, and also reduce the risk of blindness. 

So I delayed a Prolia shot, whereupon three vertebrae -- two thoracic and one lumbar - -fractured!  

The pain was unbelievable!  I could hardly walk for several weeks and even today over a year later, I am still in a good deal of pain.

So you can imagine how I felt when I learned that it was NOT the PROLIA. but the osteoporosis itself that was the risk factor for macular degeneration! 

I hope that the retina doctor who so casually told me that the macular degeneration was "because [I was] on Prolia" will rethink this advice for patients in the future.  

The flood of pain and disability I endure to this day (I am writing this in 2022) should not destroy the active life of anyone else. 

This will be something of a challenge because normally the retina doctors spend little or no time explaining anything and rarely if ever invite questions.  

But when  I asked this retina doctor why I had these eye condition requiring shots in the eye, the answer I received set off a series of actions that leave me disabled and in pain.  

I discuss this in more detail in another post:

http://www.joansbackbonedisaster.com/2021/08/are-drugs-for-my-bones-harming-my-eyes.html

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IF PAIN WERE ---

If Pain were a chef I’d be eating fabulously;

If Pain were a musician I’d enjoy the music;

If Pain were a dog we’d take a walk each day;

If Pain were a comedian I’d be doubled up in laughter;

If Pain were a job I’d get a nice paycheck each week;

So many IFs — but there is only the big “BUT,”  

Pain is just pain. 

JDL 10/29/21

ON MAYO CLINIC WEBSITE

 Here's my post on Mayo Clinic discussion website at: 

https://connect.mayoclinic.org/discussion/osteoporosis-prolia-and-macular-degeneration/?pg=1#comment-630158

I post as Joan26

The article they mention I already have.  Which makes me think there may not be much more out there on this!

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THINGS THAT AIN'T GONNA HAPPEN!

 In order of probability:

Most likely: Messiah will come in my lifetime!

Not very likely: My back will heal so that the pain will go away!

Highly Unlikely: Each of the kids will call once a week to see how I'm doing & maybe send a friendly e-mail now and then!

Bye-Bye Bikur Kholim!

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A GREAT TV AD IDEA FOR AMGEN

Practically every time I turn on my television I see one of Amgen's ads where someone (usually a woman) has fallen or is in a position where she might slip and fall.  Then comes the message for Prolia.  

You can see these "make-or-break-moments" ads here:

https://www.ispot.tv/ad/dQeF/prolia-make-or-break-moments

Well, I can top this!  Since I already have Prolia-related macular degeneration in both eyes (dry macular degeneration in one eye and the more advanced wet macular degeneration in the other*) here's an idea for the next generation of Prolia ads:

The lady in the ads above visits her doctor, who gives her Prolia.  

And then she falls down because she is BLIND and cannot SEE!

It would be a perfect O'Henry kind of "Gift of the Magi" sort of story and get a lot of great publicity!  Maybe even a feature in Advertising Age!

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

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AMGEN'S ANNUAL REPORT AUGUST 3, 2021

Here is a link to the Press Release accompanying Amgen's financial report for the second quarter of 2021.  

https://www.amgen.com/newsroom/press-releases/2021/08/amgen-reports-second-quarter-2021-financial-results

Amgen Reports Second Quarter 2021 Financial Results

THOUSAND OAKS, Calif., Aug. 3, 2021 /PRNewswire/ -- Amgen (NASDAQ:AMGN) today announced financial results for the second quarter of 2021.

The "highlights" in this report include a 5% increase in revenues to $6.5 billion, with product sales increasing 3% globally.  

Here were one of the highlights most relevant to this blog:

• Prolia sales increased 24% year-over-year for the second quarter, driven by 20% volume growth as new and repeat patient volumes continued to recover from the pandemic. With osteoporosis diagnosis rates remaining at approximately 90% of pre-COVID-19 levels in the quarter, we are focused on driving patient growth and are optimistic about Prolia's continued strength in the second half of the year.

And for Evenity - -a drug much like Prolia and with many of the same issues:

• EVENITY^® (romosozumab-aqqg) sales increased 30% year-over-year for the second quarter, driven by 32% volume growth. U.S. sales nearly doubled year-over-year, driven by 97% volume growth as we continued to focus on new patient activation. Rest of world (ROW) sales decreased 15% year-over-year due in part to the timing of purchases by our partner Astellas during the first half of 2020.

The URL above has the charts with all the bells and whistles. 

The point here is that Amgen appears to be doing quite well with these dangerous products and yet cannot seem to summon the resources to adequately warn consumers -- and health care providers as well! -- about their hazards!   

As I sit here in tremendous pain from the fractures occasioned by the medical mismanagement of Prolia (which I might have been able to avoid with more information) and threatened with blindness by this drug as well, I wonder what it would cost Amgen to take the same steps to warn of the hazards as to boast about the benefits of this dangerous drug.

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GOOD NEWS FROM KETTLE AND FIRE

 I like Kettle and Fire broths -- they add a lot to any meal and a great pick-me-up at anytime. 

But I was concerned about gluten and casein -- they have so many varieties and it is hard to find this info when ordering online.  

So I wrote the company  and here is the response I just received from support@bonebroths.com

"Aside from the allergens listed specifically, our Soups are allergen-free. All of our soups and broth are certified gluten-free. They are also free from tree nuts, peanuts, dairy, shellfish, and soy (unless specified on the ingredient label.)

We also have rigorous cleaning and safety protocols in place to ensure we go above and beyond what is required by law to further ensure our customers' safety. Ingredients are packed and stored separately to minimize cross-contamination."

Good News indeed!  

(Since I cannot get out to shop much because of my broken back I appreciate these broths that I can get online!)

(Posted at https://joanscovid19blog.blogspot.com as well.)