WHAT MY VERTEBRAL XRAYS LOOK LIKE

Here's what my vertebral xrays look like.  It's hard to read the xrays in this medium, but this picture gives a good idea!

 

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SPICE FOR BONES

 See Dr. Susan Brown's great article on Spices for Bones in Women's Health Network.

https://www.womenshealthnetwork.com/bone-health/best-spices-for-your-bone-health/

The spices she discusses are: Cinnamon, Cloves, Garlic, Ginger and Turmeric.

Well worth reading the article!

                                                               

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WHY I TRY TO KEEP ACTIVE DESPITE THE PAIN

The multiple vertebral fractures I suffered in connection with the medical mismanagement of the osteoporosis drug Prolia at the University of Chicago affects much more than my bones!

The pain I deal with each day makes it very hard -- and very painful -- to stay active!   

But active I must be, because what's left of my health -- especially my cardiovascular health -- demand it!

I was saddened to learn of the recent passing of one of my favorite writers, the great Stephen Sondheim, on November 26, 2021.    

https://youtu.be/gjNWFqWU5Co

(Use BACK ARROW at the top of this page to return to this blog.)

Dr. Gabe Mirkin, whose common-sense columns I've found helpful over the years, wrote this article, which I strongly suggest reading! 

https://www.drmirkin.com/histories-and-mysteries/stephen-sondheim-and-sudden-death-in-older-people.html

(Use BACK ARROW at the top of this page to return to this blog.)

Dr. Mirkin's recommendation: KEEP MOVING!

Here is the reason he gives:  

"A key to prolonging your life and preventing disease is to keep on moving. Lying in bed for many hours each day is a certain way eventually to kill yourself. Each day that you spend not moving your muscles weakens your heart until eventually you can die of heart failure."

And keeping moving -- despite the pain from the fractures -- is what I'm trying my best to do!

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REBOUNDING HELPS!

 GENTLE rebounding on my Bellicon Rebounder seems to help me keep up my strength and keep from coming too debilitated.  

Here is a link from Bellicon discussing some of the benefits.

https://www.bellicon.com/us_en/benefits/research

To copy!  

https://www.bellicon.com/us_en/benefits/research

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.)

THE BRIGHT SIDE OF PROLIA FRACTURES

Now, during this horrendous COVID-19 epidemic sweeping the land, my Prolia fractures are keeping me safe!   

The pain of walking, standing or even sitting upright for long periods of time is such that travel, shopping, or even getting together with friends is not at all enjoyable.  

Because of the pain from my Prolia-mismanagement related fractures, the only forays I make out of the house these days are short walks and necessary (and, because of these fractures, painful) doctor visits -- including appointments for shots in my eye to treat the (possibly)  Prolia-related retinal disease discussed elsewhere in this blog!   

This confinement may be protecting me from exposure to COVID-19!  

So maybe I should be thankful to Prolia's manufacturer, Amgen, and also to the University of Chicago for its mismanagement of this drug!  

Perhaps they should both get Nobel Prizes in Medicine for the potential of this drug to keep its victims safely at home during this frightening epidemic!

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CHRONOBIOLOGY NOTE -- DR. FRANZ HALBERG

I am posting this tribute to the scientist who is arguably the father of modern chronobiology as my Backbone Disaster has left me so unable to engage in usual activities that I am losing my sense of time.

This link features Dr. Franz Halberg, born in Romania in 1919, but most recently at the University of Minnesota until his death in 2013.   

http://halbergchronobiologycenter.umn.edu/home/franz-halberg

I had the honor of hosting Dr. Halberg many years ago when he was on a speaking tour.  Many others have worked in this field (for which he coined the term "chronobiology" now in general use today) but none as extensively as Franz Halberg.

Franz Halberg: July 5, 1919 - June 9, 2013

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LOOKING FOR A SAFE OFF RAMP -- STILL LOOKS TOO DANGEROUS!

I have been scouring the internet for any information about how to get off Prolia safely.   I could find little online about this, but a solitary recent example is here:   

https://www.researchgate.net/publication/330483705_Stopping_Denosumab 

(Keep scrolling down for full text.)

Hopefully pdf file is at this link, and I have pasted the abstract below.

Here you will find a complex protocol involving other drugs.  I certainly would not have the ability to carry out this protocol on my own, and living with the pain of my bones already broken because of the medical mismanagement of Prolia would be afraid to try it in any event -- at least not without a lot of information about the experience of others who have tried it!  

Basically it purports to get you off Prolia safely and onto another osteoporosis drug, a bisphosphonate. But the last line: "Studies are urgently needed to to define the management of denosumab [Prolia] discontinuation" definitely rings true for me!  

Here is the bibliographic information:

And here is the above abstract a bit more legibly:   

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THE PROLIA SAVINGS PLAN!

Now that my Prolifrax (my name for the fractures related to Prolia and its mismanagement by the University of Chicago) have rendered me largely disabled,  I see that they are actually saving me some money!   

For starters, driving was so dangerously painful because of the Prolifrax that I got rid of my car.  This saves me a great deal of money on lease payments for the car, licenses, upkeep, fuel, maintenance, the indoor garage required in my dense high-rise neighborhood, and especially insurance (which even with a great driving record was astronomical at my age).  

This saves me LOTS of money that I could spend on fabulous vacations!   

(The cab rides for doctor visits do not come close to the expenses of owning a car in the city!)

But OH, I FORGOT --  Prolifrax (fractures associated with the mismanagement of this drug) renders getting to airports, getting on and off planes, sitting upright or standing and walking for long periods of time, handling luggage and all the rest of it --  much too painful.  So that's off the table too.  

But how about using the money I save by not having a car on great season tickets to cultural events and expensive memberships in museums and galleries?  

Yes the money is certainly there now since I no longer have a car, but again, the pain from the Prolifrax pretty well strips the enjoyment from these activities. 

Right now everyone else is getting a taste of this medicine because of COVID-19.  Hopefully that epidemic will be over in due course.  But I'll likely be dealing with my Prolifrax for the rest of my life.  

But think of the money I'll save!  

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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!

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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!

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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

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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. 

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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?*

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*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! 

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ELECTRIC CHAIR OR FIRING SQUAD

 In years past some states in the U.S. offered convicted criminals their choice of method of capital punishment.  Utah, for instance, once offered a choice of lethal injection or firing squad.  

Amgen's Prolia similarly offers me a choice!  

I can choose to stay ON Prolia and lose my eyesight to macular degeneration, which has already begun, as noted in this blog at:

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

Or, I can get OFF Prolia and risk painful fractures in addition to the ones already occasioned by a short delay in receiving a Prolia shot.   

 http://www.joansbackbonedisaster.com/2018/12/prolia-prescribing-information-from.html

The question is: what do I do now?    None of the doctors have good answers for me!   And when I call Amgen at their information number (800-772-6436), their response is, for the most part: "Ask your doctor!"

(Note added October 22, 2022) I since learned that the information my doctor gave me was incorrect.  The macular degeneration for which I am being treated is NOT because I am on Prolia.  It is because I have osteoporosis! 

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AMGEN CALLS MAY 24, 2021

On May 24, 2021, at around 12:30 p.m., I received a telephone call from a representative from Amgen named "Sara" calling from 866-264-3650,  responding to an earlier call I had made asking for some information. 

(Calling this number gets a recorded message that this is Amgen's "call back" line.  The number I've usually used to call Amgen is  800-772-6436) 

"Sara" called to say they had some publications answering my questions but could not give them to me, only to my doctor.  

I said I wanted it sent to me.  She said she would "talk to her supervisor," so watch this space.    

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NEWER WORDS FOR AN OLDER HAZARD

I never thought I'd have an opportunity to use my graduate work in linguistics in connection with this Prolia debacle, but I believe the time has come to coin a few new words!  

It simply takes too long to sum up what Prolia did to me when sharing this with family and friends who are horrified at my current condition -- in pain most waking hours because of multiple vertebral fractures, threatened with blindness from macular degeneration in both eyes, dealing with unsightly and annoying skin eruptions, etc., all, my doctors tell me, "adverse effects" of Prolia!

So perhaps getting some new words into circulation would be helpful.  Maybe Amgen could use these words too!  Always looking to help!

After all, words like "Prolia" or even "osteoporosis," do not just fall from the sky.  Someone coined them, and I could certainly do so as well.  

Here are just a few words I coined.  Because they are not (yet) in standard dictionaries, here are some examples of how they may be used in a sentence:

1. Prolifrax.  Defined as one or more fractures incurred either because of Prolia intrinsically, or because of its mismanagement, as when doctors mistakenly delay an injection.   

A sentence: When my bone doctor retired and the new doctor’s office said he could not see me to get my Prolia shot on time, I suffered three painful Prolifrax.

2. Prolidol.  From the Latin word dolor, and defined as pain associated with the the drug Prolia, both used as directed as well as mismanaged.                         

A sentence: Each day I deal with Prolidol, both because of the physical pain from multiple vertebral fractures (or Prolifrax), as well as the emotional pain of losing my active life.  

3.  Proliblind: Defined as vision loss associated with Prolia.

A sentence: I hope the macular degeneration in both eyes that my doctor says resulted from Prolia will not leave me Proliblind. 

4. Proliderm: Defined as skin lesions resulting from Prolia.  

A sentence: My dermatologist told me the unsightly and uncomfortable rashes on my midsection, or Proliderm, were side effects of  Prolia.  But because the Prolidol caused by Prolifrax render beach outings impossible now, unsightly Proliderm is less of a problem. 

For those interested in how new words get into English, here's an interesting article! 

http://thehistoryofenglish.com/issues_new.html 

I hope readers will find this helpful!

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AFRAID OF DYING?

If you are afraid of dying, I would recommend PROLIA.

This drug could make you wish you were dead! 

Between constant pain whenever I'm walking or even standing, plus the prospect of blindness, painful dental complications, disabling fractures, irritating skin problems, and everything else this horrendous drug has done to destroy my life, I would cheerfully pay Amgen what shots of Prolia cost for the rest of my life if they could give me a way to get off this devastating drug without more damage than it has already caused.   

It would be the greatest deal of my lifetime! 

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PROLIA AND VISION -- MUST I CHOOSE BETWEEN LAME OR BLIND?

On Thursday, May 20, 2021, I had my regular checkup and treatment at Illinois Retina Associates, a team of M.D. ophthalmologists specializing in conditions of the retina, the part of then eye that actually does the "seeing."   

I first saw these retina specialists in June, 2019, referred by my regular ophthalmologist who had noticed, during a routine examination, a condition called wet macular degeneration in my right eye.

The retinal specialist told me I had macular degeneration in BOTH eyes!  There was the more advanced retinal degeneration in my right eye as noted above, but also an earlier stage, dry macular degeneration, in my left eye as well.  

Untreated I could lose some or even all of my vision.   So every few weeks I receive injections of the drug Eylea, INJECTED IN MY RIGHT EYE, to counter this condition which affects the part of the eye that actually does the "seeing."  While these injections are scary, I am profoundly grateful that this treatment exists!   

The more recently diagnosed dry macular degeneration in my left eye can, at this point, be addressed with nutritional supplements (the AREDS vitamins sold over the counter in drugstores) in hopes that it will not mature to the more serious wet macular degeneration. 

According to the some doctors, my macular degeneration is most likely yet another "gift" from the osteoporosis drug Prolia, which I cannot stop without risking immediate, painful "withdrawal" fractures (which I have already suffered because of this!)  But others say the retinal condition is associated with the osteoporosis itself.

The treatment, as noted, for macular degeneration is periodic injections, via a NEEDLE IN THE EYE, of a drug called Eylea. https://eylea.us.

Now I must have an injection in the eye about once a month, although that time may gradually lengthen somewhat if the disease does not progress.  

The doctor administering this is very skilled, but it is still unnerving to have someone clip your eye open and stick a needle in it!

Could  be scooping water from a leaky boat! As long as I am on Prolia will this macular degeneration continue.  Or is the macular degeneration related to the osteoporosis itself?     

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

I am already effectively lame from the ravages of Prolia and its earlier mismanagement at the University of Chicago.  Yet there seems to be no safe way off this horrific drug!                     ~~~~~~~~~~~~~~~~~~~~~~~

Here is more about the relationship between Prolia (densumab) and macular degeneration:

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

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

Here is an earlier post about he effect of bisphosphonate drugs on vision:  http://www.joansbackbonedisaster.com/2020/12/are-bisphosphonate-drugs-associated.html

And here is another  article about macular degeneration and a bisphosphonate drug for osteoporosis.  

https://www.ehealthme.com/ds/fosamax/macular-degeneration/#:~:text=Macular%20degeneration%20is%20found%20among%20people%20who%20take,also%20take%20medication%20Alendronate%20Sodium%2C%20and%20have%20Hypothyroidism

Now, more than ever, how I wish I had run screaming from the doctor's office years ago when Prolia was first suggested!   

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FORGOTTEN BUT NOT GONE: THE SOCIAL COST OF PAIN AND IMMOBILITY

ALONE! Forgotten but not gone.  That best describes me now, after years of pain and immobility associated with the University of Chicago's medical mismanagement of the osteoporosis drug Prolia.  

The Jewish commandment concerning bikkur cholim (visiting the sick) never seemed more relevant.*  

https://en.wikipedia.org/wiki/Bikur_cholim 

These lyrics from a popular song of years ago would seem to apply to health as well as to money!  

"Nobody Knows You When You're Down And Out"

Once I lived the life of a millionaire,
Spent all my money, didn't have any care.
Took all my friends out for a mighty good time,
Bought bootleg liquor, champagne and wine.

Then I began to fall so low,
Lost all my good friends, had nowhere to go.
I get my hands on a dollar again,
I'll hang on to it 'til that old eagle grins.

Because nobody loves you
When you're down and out.
In your pocket, not one penny,
And as for friends... you don't have many.

When you get back on your feet again,
Everybody wants to be your long-lost friend.
I said it straight without any doubt,
Nobody knows you when you're down and out.

Oh, nobody knows you
When you're down and out.
In your pocket, not one penny,
And as for friends... you don't have many.

When you get back on your feet again,
Everybody wants to be your long-lost friend.
I said it straight without any doubt,
Nobody knows you,
Nobody knows you,
Nobody knows you when you're down and out.

See more about this great song in this blog at:

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

Hear a sound track at:

https://www.azlyrics.com/lyrics/ericclapton/nobodyknowsyouwhenyouredownandout.html

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*Regarding Bikur Cholim or Visitation of the Sick. 

While this is indeed a commandment, the commandment to preserve life (Pikuach Nefesh -- saving a life) overrides it.  This means that if "in person" visiting is dangerous, other forms of "non-personal" contact and support should still be appropriate.   I discuss this at:

https://joanscovid19blog.blogspot.com/2021/01/bikur-cholim-in-time-of-covid19.html

That said, I cannot begin to thank those who have called and/or sent friendly e-mails, especially during these past months of pain and immobility.  I appreciate this more than words can say.

SAVE OUR BONES REVEALS AMGEN/PROLIA MISLEADING VIDEO

The Save Our Bones post of May 8, 2021 reports the release of the National Osteoporosis Foundation (NOF) during Osteoporosis Awareness Month in May.    Be aware that NOF is largely industry sponsored, and the propaganda video below is funded by Amgen. 

Visit this link to read more about this misleading, Amgen-funded video:

https://saveourbones.com/dont-get-tricked-or-scared-by-this-big-pharma-propaganda-video/?ck_subscriber_id=202641095&utm_source=convertkit&utm_medium=email&utm_campaign=Weekend+Wisdom%3A+The+Appalling+Truth+Behind+Osteoporosis+Awareness+Month%20-%205814847

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PROLIA: LIKE AN ABUSIVE RELATIONSHIP

BEING ON PROLIA IS LIKE BEING IN AN ABUSIVE RELATIONSHIP! 

My relationship with Prolia began pleasantly enough when a trusted physician specializing in endocrine disorders and osteoporosis suggested that my osteoporosis which seemed unresponsive to changes in diet, exercise and appropriate supplements could be helped by a drug injected twice yearly.  

The drug was Prolia.  

I followed instructions for years, receiving injections of this drug on time every six months as directed, while continuing with diet, exercise and supplements as directed.  

And all went well.  Until it didn't!

As noted elsewhere on these pages, this doctor retired, and the new doctor's office staff, apparently not comprehending the importance of Prolia's "six month + five days" schedule, would not schedule my Prolia shot on time.   

This mistake, which I would call a medical clerical error, resulted in multiple vertebral fractures within days after that shot was due, leaving me with disabling pain to this day. 

Here is why I believe a Prolia regimen resembles an abusive relationship:

1. At first the abuser acts kindly, and entices a partner with loving words and acts.  

                                                   

2. But the abuser has a hidden side, a side demanding complete obedience, and when wishes or even whims are not precisely met, or even for no reason at all, that abuser responds with crippling violence!   

                                            

Similarly,  Prolia was introduced with medical reassurances (later reinforced by ads on prime time TV) that this was a good drug to avoid the painful consequences of osteoporosis. 

What was not included in these enticements -- except for tiny warnings either buried in professional inserts and/or in language failing to give clear warning to lay people, and certainly not in the information that I was given when I went on this drug or subsequently until it was too late -- is that Prolia itself and/or its mismanagement can cause all sorts of serious problems.  

Problems intrinsic to the drug itself include (but are not limited to) issues I've experienced, including macular degeneration in both eyes* that could lead to blindness, serious dental issues, as well as irritating skin problems.  

And, as noted above, this brief delay of a few days in receiving injections was quickly followed by painful and disabling multiple fractures.   

I now live with all of these distressing conditions, the most frightening being the prospect of blindness, which some doctors say is because I am on Prolia (but others say it is associated with the osteoporosis itself.  

Yet (as with the abuser who threatens even more harm should his victim try to leave the relationship) there appears to be no SAFE way off this drug!  

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*As I learned in 2022 from another retinal specialist, the eye condition is more likely related to osteoporosis itself, rather than to Prolia (as an earlier retinal specialist carelessly told me).