Over thirty years ago I was privileged to join two physicians as a co-author of the book Stopping Valium, describing, among other things, how people had become "hooked" on this popular tranquilizer.
You can still find Stopping Valium in second hand stores and on Amazon.
https://www.amazon.com/stopping-valium-Wolfe-Sidney-Bargmann/dp/B001NHPTM8/ref=sr_1_2?ie=UTF8&qid=1541806730&sr=8-2&keywords=Stopping+Valium
While writing this book I was touched by the stories of people who had tried to end their use of this drug, and how terribly difficult this was.
Today. as noted elsewhere in these posts, I am experiencing serious difficulties in getting off of Prolia. The short delay occasioned by the U. of C.'s failure to warn me about the danger of delay when their medical personnel changed, coupled with Amgen's similar failure to warn against "delay" in their literature for patients, has cost me so far nearly a year of my life, and what looks to be permanent deformity and perhaps disability as well.
As of this date I still have not been able to find a safe way to get off of Prolia without risking further painful and disabling "rebound" fractures associated with rapid weakening of bones as a direct result of stopping this drug.
I am also having some of the issues that are associated with Prolia, including the burning skin and back pain. And my dentist is concerned about doing some necessary dental work because I am on Prolia.
I could probably tolerate the skin and back pain issues if Prolia were really helping me, but not being able to have needed dental work done is quite another story. I wish I had studied this aspect of it more carefully and not trusted the prescribing doctors so much. I wish I had studied Prolia as carefully as I studied benzodiazepine tranquilizers in the course of working on Stopping Valium!
As many readers know, it can be hard for patients to do this. Even if they know how to review the online sources of information, such as the data bases of the National Library of Medicine (ncbi.nlm.nih.gov ), in my experience doctors often seem to get upset when patients question them in about these matters, no matter how gently and respectfully this is done.
And concerning the DEXA scores that scared me. I only wish I had been more aggressive in asking about this, in finding out more about the validity and reliability of DEXA scores in actually predicting fractures.
(Actually, I am beginning to learn more and more about relationships between the use of DEXA information and pharmaceutical marketing that were not as clear before, but that is another issue for another time, so watch these posts!)
When I have asked for information on how to STOP Prolia, Amgen (Prolia's manufacturer) tells me to ask my doctors. I do that, but so far the doctors seem to have no solution except for switching to even more frightening drugs.
Truly, I feel like a fish in a gill net. A struggle to escape could lead to severe damage. And staying on Prolia has other serious risks of its own.
This is why I do all that I can to urge people to think twice about starting Prolia. Despite the TV ads with smiling actors (including the lovely Blythe Danner, whom I sincerely hope is not really on this devastating drug herself), there is a dark side side to this drug that now seems to be less a remedy than a life sentence to a chemical prison with many dangers. It may be too late for me, but I can still warn others.
But right now, like the fish in this gill net, I'm suffering on this drug and could suffer even more getting off of it.
As I progress in my effort to put this drug behind me, I'll try to keep this post updated with articles from medical databases and other sources, so watch this blog.
UPDATE December 28, 2018: I've posted some of the medical journal articles I've found about the dangers of "Stopping Prolia" here:
http://www.joansbackbonedisaster.com/2018/12/articles-on-discontinuing-prolia.html
