A HAPPY SUMMER? NOT SO MUCH FOR ME!

The world around me is getting back to normal after dealing with COVID-19 for such a long time, and this is a good thing.

But for me it's just the same.  No outings, summer gatherings, or happy days at the beach.  The pain from my Prolia-related vertebral fractures is continues unabated; my capacity to deal with unrelenting pain to be with friends and family is limited.    

While I am grateful that I can get around a bit to take care of myself and not languish in a nursing home, it is with pain in every step.  And while I try to walk a few blocks each day, it is with pain, and venturing much beyond that is simply too painful.

I'm grateful that there is a small market in the building next door, because supermarket shopping would be out of the question for me.

And since I no longer have a car (dangerously painful to drive) I pretty much depend on their limited offerings and a few online grocery services. 

It's sickening to see Amgen's Prolia commercials on TV.  I wonder if they would ever invite me to be one of their "models!"    HA!

                                        ###

LIVING WITH AMGEN'S KNEE ON MY NECK

I am writing this on June 25, 2021.  (Please note: the publication dates on this blog are irrelevant -  they are my only way of "ordering" posts.)

Today I watched the sentencing hearing of Minneapolis Police Officer, Derek Chauvin, who was convicted of murdering George Floyd on May 25, 2020, while Mr. Floyd was under arrest and in the custody and care of Officer Chauvin.   

To briefly recap the facts as widely presented on media, Mr. Floyd was accused of taking food from a fast food restaurant without paying.  He was apprehended by police, and (as widely broadcast),  Officer Chauvin kneeled on Mr. Floyd's neck for an extended period of time resulting in Mr. Floyd's death.  

Why is that in this blog?  

I compare myself here to George Floyd, and I compare Amgen to Officer Chauvin.   This is because since I am "guilty" of suffering from osteoporosis I've had Amgen's knee on my neck for the past several years.   

As discussed elsewhere in the blog, Prolia created many problems for me.  And when Prolia was stopped for a short period of time, I suffered even more devastating effects.  

Just as Officer Chauvin enjoyed the authority of the state, I was prescribed Prolia by doctors licensed by the state to prescribe this drug. And Prolia, in turn, also enjoyed official approval, via the United States Food and Drug Administration (FDA). 

Amgen, the manufacturer of Prolia, employs trained scientists and executives knowledgeable about their products, providing information via many channels to health care professionals and to the public as well, presumably working within rules set by the FDA.    

As a lay person, where the drug Prolia is concerned, I must rely not only upon the prescribing doctors, but, by extension, upon Amgen (which advertises not only to medical professionals but widely to the lay public as well), both enjoying certain official rights and subject to certain responsibilities.   

In that sense, it could be said that both Amgen and Officer Derek Chauvin had certain things in common in that both had official recognition and licensing for what they do; the assumption being that they would use these privileges responsibly.  

And as for me?  I am most like George Floyd, having made a very bad mistake (in my case starting Prolia in the first place) and paying for that mistake with my active life!

                                                             ###

A LIMERICK THAT SUMS IT UP

For a painful and fractured spine, 

And eyes that begin to go blind,

And a jaw that could break,

With a painful toothache, 

Just keep Amgen's Prolia in mind!

LOVELY WHEN BOB HOPE SANG THIS,* BUT HERE'S MY VERSION!

No thanks for the constant pain, 

For fractures of the spine,

And eyes that could go blind, 

And dentist scared to treat toothache,   

For fear my jaw could break!

No thanks, Prolia!

No thanks for the itchy skin, 

That covers me with bumps, 

Just more of Prolia’s lumps, 

I only hope more bones won’t break,

And leave me with a hump!

No thanks, Prolia

    Like a fool I allowed this disaster, 

    And let those shots under my skin!

    Now problems come faster and faster!

    Being lame is a grind,

    And I’m scared to be blind!

It seems there’s no safe way out!

The truth to you I’ll tell,

Into Amgen’s trap I fell, 

Now Prolia has sent me,

On a One Way Trip to Hell!

No thanks, Prolia!  

---------------------------------

*To enjoy the original, with Bob Hope and Shirley Ross, please click this link (not the picture, and sorry if ads pop up first):

https://www.youtube.com/watch?v=2dBokxZFMNw

                                           ###

A MYTHIC CHALLENGE!

The mythic Sisyphus was condemned to roll a rock up a hill forever, with no possibility of successfully reaching the top.  

This is how I feel these days, as I work so hard to get better!

And this is how I often feel at doctors' offices:

The doctors poke and prod and may help keep some of the damage done when I skipped Prolia  because of the flood of misleading information I received from the retinal specialist who said my retina problems were because I was "on Prolia."   This is discussed elsewhere in this blog.  

I spoke with Amgen about this at their "hotline" at 1-800-772-6436.  

But neither they nor anyone else seemed to be able to give me the information I sought about the relationships between osteoporosis, macular degeneration, and Prolia. 

                                                            ###

I CAN'T UNBREAK MY BACK BUT CAN I AT LEAST GET OFF PROLIA?!

This post was written when I still believed the flood of information I received from the retina doctor to the effect that my eye condition - macular degeneration -- was because I was on Prolia.   This turned out not to be true.  In fact the macular condition was because I have osteoporosis.  

But this is what I wrote at the time:  

What the retina doctrSinger Toni Braxton sang of her hopes in "Unbreak My Heart" (https://www.musicindustryhowto.com/best-goodbye-songs/) but so far I cannot find a way to "unbreak my back!"

That said, I'd love to get off Prolia, which has pretty much demolished my normal, pain-free life, and which, among other things, makes dental work a lot more complicated, and, worst of all even threatens to destroy my vision.

I've heard that it might be possible to get off Prolia, and then go on another osteoporosis drug, Reclast (zoledronic acid, or zolendrolate, manufactured by Novartis Pharmaceuticals, 888.669.6682.)  

While Reclast has its own long list of warnings, it may not present the same "withdrawal" problems as Prolia does.  If this is the case I could, after a time, stop Reclast and be free of this poison for whatever remains of my life.  So I definitely want to research this.   

This would all have to be carefully timed (more fractures could destroy the bit of normal life still remaining) and could take a while to accomplish; something to consider at my age. 

Even if successful, it obviously would not unbreak my back, but it might save my vision and spare me more of the dental and other problems Prolia has created!  

I'll continue searching for other ways to get off this evil drug!     

It would be great if Amgen would be helpful with this in any way, but so far no luck.   

I wonder if Amgen (product inquiries 1-800-772-6436 or medical 1-800-926-4369) has a Vice President for Rachmones?*

------------------------------------

*Rachmones - a wonderful Yiddish word defined as compassion, pity or mercy. 

WILL I HAVE VISION OR BONES IN 2021 -- INACCURATE INFO NOTED

For the past year or more I have been receiving periodic injections of the drug Eylea, injected IN MY RIGHT EYE, to counter wet macular degeneration -- a condition affecting the retina of the eye.  While these injections are scary, I am grateful that they exist.  

I was also recently diagnosed by my retinal specialist with dry macular degeneration in my left eye which is being addressed in the customary way with nutritional supplements in hopes it will not mature to the more serious wet macular degeneration. 

More recently I have learned about relationships between the osteoporosis drug  Prolia (denosumab) and MACULAR DEGENERATION, a serious eye condition that ultimately can lead to blindness! 

At first I was not aware of this relationship --- indeed, no doctors treating either my osteoporosis or my retinal condition mentioned this, although I had made this clear in my history for both.

I was able of find a few articles suggesting a causal relationship between Prolia (denosumab) and macular degeneration.  

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

and

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

But the weight of evidence I have found suggests that it is not Prolia itself, but actually osteoporosis itself, that is most likely the cause of macular degeneration.  

I am already effectively lame -- and also in pain most of the time -- because of the ravages of Prolia and its earlier mismanagement at the University of Chicago.  

But now, since I know of no safe way off this drug without risking more painful, disabling fractures,  and if the authorities holding that Prolia is the culprit here I fear I might wind up losing not only my mobility but my vision as well!

I am grateful that there are treatments for both Wet and Dry Macular Degeneration.   If not cures, they at least may slow the progression.

But how I wish I had run screaming from the doctor's office years ago when Prolia was first suggested! 

But please see other posts in this blog where I note that most (perhaps all?) authorities hold that macular degeneration is associated with osteoporosis rather than with the drug Prolia prescribed to treat osteoporosis.  

And I am leaving the erroneous posts - (with some corrective notes added) - to show what I believed when I received a flood of inaccurate information about a putative relationship between Prolia and macular degeneration.    I'll report more on this as I learn more.  

---------------------------

DOES AMGEN REALLY CARE IF YOUR BONES ARE BROKE?

(Tune: Nobody Knows You When You're Down and Out*)   

Once I had a body that worked ok,

I ate right and exercised every day,

But bone scans showed something bad was beginning, 

I had osteoporosis and my bones were thinning!

My doctor tried oral drugs, but then urged more, 

That’s when Amgen’s Prolia walked in the door, 

I got shots twice a year, but my doc retired, 

So when my shot came a few weeks late, 

My bones came unwired! 

Chorus: 

Does Amgen care, if my bones are broke?

They advertise Prolia Direct to Consumer!

But their warnings seem inadequate, and that's no rumor! 

If I could control that company’s stock, 

It would drop just like a stone from the Top of the Rock!

‘Cause it seems to me, and that’s no joke:

Amgen could care less if my bones are broke!

                                      ###

*Parody of Nobody Knows You When You're Down and Out! by Jimmie Cox, 1923.  

Here's some background of this song:

https://en.wikipedia.org/wiki/Nobody_Knows_You_When_You%27re_Down_and_Out

And see the lyrics and hear the original sung by the great Bessie Smith:

http://www.joansbackbonedisaster.com/2021/02/when-youre-down-and-out.html

Original Lyrics also appear in this blog in another post at:

http://www.joansbackbonedisaster.com/2021/01/forgotten-but-not-gone-social-cost-of.html

KEEPING SCORE: PROLIA: 5, JOAN: 0!

A brief overview of what Prolia has done to me so far.  Some of this is also discussed elsewhere in this blog.

I. Damage intrinsic to Prolia itself:  

    

A. Wet macular degeneration (the more serious kind) in my right eye requiring periodic shots of a medicine, Eylea, administered by a retinal specialist via a needle IN THE EYE!  (Untreated this could lead to blindness.)

  

B. Dry macular degeneration in my left eye, so far addressed with AREDS vitamins in hopes that it will not progress and become WET macular degeneration requiring a needle in the eye (as the right eye already requires). 

C.  Brittle jaw, creating risk of a jaw fracture during routine dental work, which therefore must be done by a highly-specialized, hospital based oral surgeon, after signing some serious releases!

D. Unsightly and uncomfortable skin rashes. 

II. Permanent damage caused by the medical mismanagement of Prolia.   This consists of painful and disabling multiple vertebral fractures occasioned by a brief delay in receiving Prolia (resulting from inexcusable administrative mishandling during a change in personnel at a major medical center.) 

Thank you for visiting! 

                                               ###