SERVING A LIFE SENTENCE IN PROLIA PENITENTIARY AND AN UPDATE

As "punishment" for agreeing to a new drug, Prolia, before it had been on the market for at least five years, I am now serving a life sentence, mostly on my bunk, in what I call Prolia Penitentiary.  

Actually, it's more of a form of house arrest.  If I venture from my house for more than a few hours I am punished with terrific, crushing pain.   

While much of the world has done away with corporal punishment and torture, and while cruel and unusual punishment is forbidden under the United States Constitution, it is still regularly employed here in Prolia Penitentiary, an institution which punishes escape attempts with painful fractures, and continues to inflict terrific pain even when inmates leave the grounds for a short time!    

 I'm in Prolia Penitentiary now for
taking Prolia so soon after FDA Approval.  Care to join me?
Get your Prolia shot and perhaps you can!

UPDATES!!!!

January 14, 2000:  I spoke with my bone specialist at Northwestern University today.  (Following Amgen's instruction, below, of "ask your doctor.")  I asked her if she knew a SAFE way to get off Prolia.  We discussed this for a while but bottom line is no, she cannot say that there is a safe way off Prolia, so I guess I continue my stay in Prolia Penitentiary for the time being.

We are in the process of figuring out a safe way to address the painful tooth waiting for extraction discussed in another post at: 
http://www.joansbackbonedisaster.com/2019/12/a-cruel-prolia-related-choice-must-i.html

May 16, 2019: 
.  

I spoke with an Amgen Representative today at 800-772-6436 (Amgen's consumer number).   I wanted to be sure that I was reporting this accurately.   Here is what I have learned in this and other similar calls about getting off Amgen safely (that is, without breaking bones.) 

1.  Amgen's answer to the question as to how to get off Prolia safely has been to "consult with your doctor."  They have said this to me a few times, but in fairness I wanted to be absolutely sure I understood them correctly.  Today they were impatient to the point of rudeness in reminding me that they had told me this before, so I will assume that this is Amgen's position on the matter.  

2.  I have indeed consulted with Dr. B. about this.  She told me that she had consulted with Amgen about this herself, and said they gave her no useful advice on this.    

3. Dr. B. had at one point mentioned an off-label use of the IV injectable bisphosphonate drug called  Reclast (zoledronic acid, manufactured in the U. S. by Novartis).  It looked quite frightening to me,  and she has to date given no other suggestion.  She also indicated that I was not a good candidate for this off-label procedure in any event. 

This leaves me with the conclusion that neither Prolia's manufacturer, Amgen, nor Dr. B. at the University of Chicago, knows how I can get off of Prolia safely -- that is, without breaking more bones or something even worse! 

So this fish is still caught in the gill net, with no way out!

  

THE FUTILITY OF CALLING AMGEN

Every few weeks or so I call Amgen's "consumer" number:  1-800-772-6436 (800-77AMGEN) to report on my condition and ask for advice about getting off Prolia.   

I also ask them how they are coming along with getting proper warnings on their labeling for doctors and patients, and with getting their deceptively attractive ads off television.

These calls are usually answered by a nurse or a pharmacist.  I tell them what is going on in my life because of Prolia; the disability coupled with nearly constant pain.   I also ask about other concerns (such as not being able to get needed dental work done).  

Most importantly, I ask them if they have any new information that would help me get off Prolia safely, that is, without additional fractures.  Their answers are invariably the same: "Ask your doctor."    

They should know that this is a ridiculous answer because when my doctor reported that when she actually DID call her professional source at Amgen, they could not advise her either!   (Maybe they just don't want to admit that Prolia can be a non-refundable one way ticket to Hell!)

The last time I called Amgen, the person who answered the phone reminded me somewhat testily that I had called several times before.  I said this was so but that I kept hoping that something new might have come up that could help me get off this wretched drug Prolia. 

This was my mistake, because taking the same action in hopes of achieving a different result is the height of illogic, but pain and frustration sometimes scream at me with a louder voice than logic these days!  

I make these calls while flat on my back, my only pain-free posture.  I make them hoping my questions and concerns will be forwarded to Amgen's product safety people (whose number is closely guarded by the front line people with whom I speak at 1-800-772-6436), and perhaps from there to the FDA.   I have no way of knowing for sure if this is done, so I often repeat calls just to increase they odds that they'll get to the right place. 

Besides hoping for something to help me rehabilitate from this Prolia-fed disaster, I would like to see my calls result in added warnings to discourage others from stepping into the Prolia trap as I did!    

So I urge others similarly harmed by Prolia to call 1-800-772-6436 and wade through the various "menus" until you talk to one of Amgen's nurses or pharmacists.  Perhaps your report will help bring about clearer and more direct warnings to patients and doctors, along with an end to such widespread promotion of Prolia (such as Direct to Consumer TV advertising!)   

Here is more information from Amgen about this:  
https://www.amgen.com/products/global-patient-safety/adverse-event-reporting/  

And: https://www.amgen.com/~/media/amgen/full/www-amgen-com/downloads/policies/adverse_event_product_complaint_reporting_policy.ashx?la=en 

While Amgen is required to send certain reports about information received in this way to the FDA, there is also a government  voluntary reporting form you may use for this purpose: 

https://www.fda.gov/safety/medwatch-fda-safety-information-and-adverse-event-reporting-program/reporting-serious-problems-fda Here you will find a link to the consumer friendly Form 3500B you can use for this purpose and submit electronically.