Sunday, November 25, 2018

MY WORST MISTAKE -- TRYING PROLIA TOO SOON

My Very Worst Mistake in this entire disaster was was not following WHAT HAS BEEN MY OWN HARD AND FAST RULE FOR MANY YEARS:

DO NOT USE ANY DRUG UNTIL IT HAS BEEN ON THE MARKET  AT LEAST FIVE YEARS, AND, IF POSSIBLE, EVEN LONGER.

WHY?  Because when new drugs are in the testing phase, prior to marketing, while they are tested on humans, and while information is gathered about safety and efficacy, the numbers are limited.  This means that for drugs intended to be given to large numbers of people (that is, for common disorders), it may not be possible to know how many people might be harmed from the small "pre-marketing" sample.

During the first several years after approval, when the drug is being used by a LOT of people, problems may become more apparent as hundreds, thousands or even millions are using the drug, as opposed to the far smaller number during the pre-approval, pre-marketing period.

Prolia completed FDA approval and came on the market in 2010.  I was prescribed it in 2012.  My biggest mistake was letting panic get in the way of reason, and saying yes to a proposed new drug, where I normally would have said NO.   How I wish I would have waited at least three more years.

The argument contra would be that during that three year period I might have broken bones.  Well, I broke a lot of bones anyway as it turns out!   You may argue, this was due to the change in doctors occasioning delay.  Perhaps.

But how I wish I could turn back the clock and answer my doctor's suggestion with a resounding NO!

Now I'm caught in the web of a drug which I now know (and didn't know back in 2012) that is having some other ill effects (interfering with needed dental work, and other problems as well) and so far neither Amgen nor my doctors have been able to offer a safe way to get off of it.  

Can this mistake of starting Prolia in the first place be undone?
I'll report when and/if I learn anything useful!