ARE BISPHOSPHONATE DRUGS OR PROLIA ASSOCIATED WITH MACULAR DEGENERATION?

I'm dealing with macular degeneration (which I now have in both eyes) and learning more about possible links between osteoporosis and this condition and possibly the role of some of the osteoporosis drugs, particularly Prolia (denosumab).  But this may be true of the oral bisphosphonate drugs as well.   Obviously age is a common factor but retinal specialists treating me have suggested this and I have seen literature to support this.  More on this as I learn more!  

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May 8, 2021  Adding this article:

https://www.ehealthme.com/ds/prolia/macular-degeneration/#:~:text=Macular%20degeneration%20is%20found%20among%20people%20who%20take,Prolia%20from%20the%20FDA%2C%20and%20is%20updated%20regularly.

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REPURPOSING AN OLDER POEM FOR A NEWER DRUG

Many years ago the FDA approved three drugs for male erectile dysfunction.   It turned out that they had side effects that could adversely affect vision.

This also turns out to be the case with Amgen's Prolia, which already appears to be associated with macular degeneration -- as of May, 2021 dry in my left eye, wet in my right eye.  

(This association with Prolia was confirmed by the retinal specialist now treating me for macular degeneration!)

So here is a poem I wrote over fifteen years ago.  

I need to write another poem for Prolia.  But here is the original.  

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A “Dear Doctor” letter: 

 

Dear Doctor, as you toil at daily grind, 

Consider him, in lusty state of mind,

Who trembles at love’s doorstep, yet can’t cope.

For him Three Muses gently lift his hope! 

Viagra, Levitra and Cialis are their names,

And justly they have earned their worldwide fames!

Lately sprung from Pfizer, Bayer and Lilly,

They’ve made a lot of swains act downright silly!

But a darker side to pharmaceutic passion,

Should surely place your scrip on stricter ration.

Cupid’s arrows can be a sweet surprise,

But never when they strike you in the eyes.

So please accept these gentle protestations:

Love may be blind, but please, Doc, not your patients! 

 

Joan Levin -- 2005

 

 

JUVENT? MARODYNE?

Juvent and Marodyne are two devices that jiggle you around and purport to help with osteoporosis by stimulating bone growth.

I'm working with both of them.  

bright and JoansBones for inspire.com  for name Rawchi

maybe JoansBones there too?

HOW MY BROKEN BACK MAY BE PROTECTING MY LIFE

(Note: This is written tongue in cheek!  I do not recommend this to anyone!  But it's what's happening for me right now!)

While I endure the pain I am experiencing due to multiple vertebral fractures resulting from the totally avoidable clerical errors made by the University of Chicago, and while I am sad for all I have missed over the past few years on this account, and especially on the recent holidays -- days (at least pre-COVID-19) for gathering with family and friends -- I must also consider that the restrictions now occasioned by this pain may also be reducing my risk of contracting COVID-19.   (https://joanscovid19blog.blogspot.com)

I have not been able to join family or friends at the beach, picnics, movies or concerts or other enjoyable summertime events.  The pain is just too severe if I am sitting up or standing for more than an hour or so. 

But this year, these activities would also pose risks for me -- especially at my age -- of contracting COVID-19.    So right now my only activities beyond the walls of my apartment (where I live alone without visitors or household help) are occasional walks around the block and medical appointments.  

A painfully broken back is not something I'd recommend as a prophylactic approach to COVID-19, but since it was bestowed upon me by my University of Chicago doctors, I might as well treat it as a gift -- even when it hurts!    

So thanks, University of Chicago -- even with the pain I deal with every single day of my life, your monumental clerical screwup may turn out to be providential!  

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A RETIREMENT

Ding Dong he's gone!  He retired September 1, 2020.

 Had this retirement been a few years earlier I would not be living in pain every day of my life!

https://www.facebook.com/IllinoisRetina/posts/happy-retirement-dr-flood-on-this-next-chapter-of-your-life-we-celebrate-and-con/3288637167857727/

How such a careless person ever got to practice any sort of medicine is still a mystery to me as I live every moment of my life with the resulting from his careless words! 

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DING DONG HE IS GONE -- OR AT LEAST RETIRED!

Dr. Timothy Flood retired at the end of August, 2020 

https://www.illinoisretina.com/retina-specialists/dr-flood#:~:text=Flood%20holds%20memberships%20in%20several,the%20end%20of%20August%2C%202020.

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A CRUEL AND ANCIENT PRACTICE REVISITED

Many years ago, the feet of many young Chinese girls were tightly bound, resulting in crippling broken bones.  This was considered culturally desirable and even erotic, and was said to make girls better able to make marriages profitable to themselves and their families. 

This was largely an "upper class" practice, as it rendered women unable to engage in many activities and required servants to do many necessary tasks of daily life.  

Foot binding is addressed in the novel Snow Flower and the Secret Fan by Lynn See, set in 17th Century China.  This practice gradually ceased, and was at least nominally eliminated under Communism.

I cannot help but think about this as I try to recover at least some remnants of the active life I enjoyed before several vertebral fractures resulting from the medical mismanagement of the osteoporosis drug Prolia left me with pain when walking, standing or even sitting up.  
And see:  https://www.dailymail.co.uk/femail/article-3227755/Chinese-woman-84-recalls-agony-having-feet-broken-bound-just-six-years-old-women-big-flat-feet-laughed-at.html

The "privilege" I enjoyed of being treated at a famous university and being given an fabulously expensive (albeit quite hazardous) drug for osteoporosis was similarly more likely to happen to someone in comfortable economic circumstances, much like the well-born girls in China whose may have even agreed to have their feet bound and broken.  

I think about these girls at times when the pain is really bad.  

And, as I consider the role of Prolia in destroying my active life, this thought resonates!   

WHAT I CANNOT DO AND WHAT I CAN DO

Before my back broke -- thanks to the medical mismanagement of Prolia, I could do the following things easily, and without pain.

1. Take care of my daily needs, including shopping for food, managing other activities of daily life with ease.

2. Spend enjoyable retirement time with friends and family, visit their homes, attend important family events (weddings, funerals, etc.), enjoy my grandchildren,  go out for dinner with friends, entertain from time to time.

3. Travel - one of the things I most enjoyed in retirement.  Visiting new places on my own or with friends, enjoying a few winter weeks in warmer climates and summers at a family place in the Indiana Dunes.

4. Getting about the city on foot, by public transit, and driving my car.

5. Actively engaging in community activities, political campaigns, and good causes of various kinds.

None of these things are possible for me now, at least not without so much pain as to cancel much or all of the enjoyment they might offer.

So what can I do?  I can do everything I can to warn others about how Prolia and its mismanagement can destroy active living, and turn an enjoyable middle and old age into a kind of hell on earth.  I am stuck in this painful trap of a broken body forever, but if I can keep even one other person from falling into the same trap I'll have done my job.

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