Driving my car was out of the question during those early months, and even getting into a cab to go downtown to see the doctors was terribly painful. In fact, I did not have a minute without pain unless I lay motionless, flat on my back.
Seeking Help from the Prescribing Physician.
I kept in touch with Dr. B. at the University of Chicago (U. of C.) and saw her as well. I thought that two things that could help me would be diet and exercise. Being post-menopausal, while exercise could help, I believed that the main function of diet would be less about building bone density and more about maintaining blood levels of nutrients needed for normal bodily functions (including but by no means limited to calcium and vitamin D) for many reasons, including preventing minerals from being extracted from bones.
Dr. B. sent me a list of foods with calcium, most of which were dairy based. Perhaps this was to counteract the effects of Prolia, but I'm not sure. However, I'm allergic to casein, a protein in milk products (and I always state this allergy, along with gluten, on all medical forms I'm given to fill out), and there wasn't much about other calcium sources.
There was nothing about other nutrients besides calcium needed for strong bones. So I asked if there might be a clinical nutritionist at the U. of C. to advise. But no one seemed to have that information either. (I later learned that there might be this resource at the U. of C. but at the time I most needed it the doctor involved did not seem to know about it.)
There was nothing about other nutrients besides calcium needed for strong bones. So I asked if there might be a clinical nutritionist at the U. of C. to advise. But no one seemed to have that information either. (I later learned that there might be this resource at the U. of C. but at the time I most needed it the doctor involved did not seem to know about it.)
I also understood that while the right kind of exercise could help increase bone density (and had worked with a trainer for this reason for many years) I also knew that the wrong kinds of exercise -- especially ones involving flexing the back such as "crunches" -- could further stress my compromised bones enough to cause more fractures. So I asked if there was a physical therapist at the U. of C. who could help me restore some of my strength, consistent with these issues. No one could tell me that either; just that there "might be a P.T. on 53rd Street." (Turns out that perhaps there is, but by that time I'd found an extremely skilled and helpful P.T. through my long time Chiropractor, Dr. Anne Gordon.)
Seeking help from Amgen, the Manufacturer of Prolia.
Next I called Amgen, the manufacturer of Prolia, again to see if they could offer rehabilitation advice -- especially about diet and exercise -- for incidents of this sort involving their drug. They couldn't. They simply told me to consult my own physician. I have called them every few weeks to let them know of my progress and to see what progress they are making with getting the FDA to approve warnings about delay on Prolia. I also ask if they have developed any kind of protocol for individuals in my situation. Again, they have no useful answers for either of these questions.
(Post Script: All Amgen has done, as mentioned in another post, has been to have their lawyer call me to instruct me to stop calling them, an instruction I've ignored.)
Seduced and Abandoned.
Having been seduced into using Prolia, I definitely felt abandoned by what came next. While both Amgen and the U. of C. were quick to provide this drug, neither, in my view adequately warned of the dangers of even a short delay, and, in the case of the U. of C., failed to handle the change in doctors appropriately. And then, when disaster struck, both Amgen and the U. of C. left me on my own to deal with the painful and disabling consequences.
I should add that Dr. B. at the U. of C. ordered many tests, all of which I had done, but while they are all recorded in My Chart it appears they offered no clear answers.
I should add that Dr. B. at the U. of C. ordered many tests, all of which I had done, but while they are all recorded in My Chart it appears they offered no clear answers.
The most helpful service at the University of Chicago as I tried to recover some shred of my life again was their Pain Management Clinic where I saw Dr. Rana. I continue to see him from time to time to this day and he continues to give practical advice, encouragement and badly needed doses of human kindness as I struggle to get better.
Dr. Rana has also helped me sidestep some potentially dangerous treatments (such as kyphoplasty surgery -- which he does) that would not be useful (and could even be harmful) for me.
http://www.joansbackbonedisaster.com/2018/07/alternative-help-to-pick-up-pieces.html)
Dr. Rana has also helped me sidestep some potentially dangerous treatments (such as kyphoplasty surgery -- which he does) that would not be useful (and could even be harmful) for me.
http://www.joansbackbonedisaster.com/2018/07/alternative-help-to-pick-up-pieces.html)
Footnote: Patient's Fault?
"You should have known," you might be thinking. "Surely there were warnings!"
Perhaps more on this later, but for now, just know that for the six years or so that I was on Prolia I went to the U. of C. like clockwork, never missing an appointment. As noted in an earlier post, there were either 1, 2, or 3 elements in each of these appointments -- the Prolia injection, the visit with the doctor and the DEXA scan.
While technically each of these elements might have been a separate appointment, I had become accustomed to regarding them as one event with three components. Indeed, they were treated as such by the U. of C., and I received just one "reminder" call from the U. of C. for for these. So my treating these three elements (Prolia shot, DEXA scan and doctor visit) Prolia shot as one appointment when they were scheduled together was reasonable and understandable.
Therefore, when Dr. A. was no longer there, and when there was a delay of several weeks in seeing Dr. B., (as noted in an earlier post) I believe I should have been reminded that I should still come in for my Prolia injection, even though there my previous doctor was no longer there and there would be a delay in seeing the new one.
Also, had a strong warning about the consequences of delay been given to me with each Prolia shot (instead of just a little tab with the next appointment date), this too might have caused me to insist much more forcibly that even though there was no doctor to see me, I should come in just for the Prolia shot.
(Knowing what I know now, I might even have gone to court seeking emergency injunctive relief to require the U. of C. to give me this injection on time!)
In my opinion, such a warning should also have been part of Amgen's labeling for patients.
I asked Dr. B. why records could not be flagged for patients on Prolia to make sure that their shots were not delayed in case an appointment had to be delayed either because of the doctors or the patients. At first Dr. B. said that schedulers could not keep track of things like this. I responded that my record was flagged so that schedulers knew that I was on Medicare and that therefore my appointments couldn't just be six months apart; they had to be six months and five days apart.
This left me wondering how many other patients were caught up in the same situation when Dr. A. left but I have no way of knowing, or knowing if anyone warned them.
But the fact remains: both Amgen and the U. of C. were happy to have me come in for expensive Prolia injections, but when -- largely as a result of failure to warn -- disaster struck, neither had any real help to offer, and I was left almost totally on my own resources to deal with the long-lasting pain and disability.
Truly, I felt seduced and abandoned!
(Later, as noted at http://www.joansbackbonedisaster.com/2018/09/trying-to-warn.html, Dr. B. tried to remedy this failure to warn situation to some extent, but I believe far more stringent methods are in order, and that Amgen should bear some responsibility for this, for warning patients specifically about the danger of delay.)
Perhaps more on this later, but for now, just know that for the six years or so that I was on Prolia I went to the U. of C. like clockwork, never missing an appointment. As noted in an earlier post, there were either 1, 2, or 3 elements in each of these appointments -- the Prolia injection, the visit with the doctor and the DEXA scan.
While technically each of these elements might have been a separate appointment, I had become accustomed to regarding them as one event with three components. Indeed, they were treated as such by the U. of C., and I received just one "reminder" call from the U. of C. for for these. So my treating these three elements (Prolia shot, DEXA scan and doctor visit) Prolia shot as one appointment when they were scheduled together was reasonable and understandable.
Therefore, when Dr. A. was no longer there, and when there was a delay of several weeks in seeing Dr. B., (as noted in an earlier post) I believe I should have been reminded that I should still come in for my Prolia injection, even though there my previous doctor was no longer there and there would be a delay in seeing the new one.
Also, had a strong warning about the consequences of delay been given to me with each Prolia shot (instead of just a little tab with the next appointment date), this too might have caused me to insist much more forcibly that even though there was no doctor to see me, I should come in just for the Prolia shot.
(Knowing what I know now, I might even have gone to court seeking emergency injunctive relief to require the U. of C. to give me this injection on time!)
In my opinion, such a warning should also have been part of Amgen's labeling for patients.
Could this all have been Avoided?
I asked Dr. B. why records could not be flagged for patients on Prolia to make sure that their shots were not delayed in case an appointment had to be delayed either because of the doctors or the patients. At first Dr. B. said that schedulers could not keep track of things like this. I responded that my record was flagged so that schedulers knew that I was on Medicare and that therefore my appointments couldn't just be six months apart; they had to be six months and five days apart.
This left me wondering how many other patients were caught up in the same situation when Dr. A. left but I have no way of knowing, or knowing if anyone warned them.
But the fact remains: both Amgen and the U. of C. were happy to have me come in for expensive Prolia injections, but when -- largely as a result of failure to warn -- disaster struck, neither had any real help to offer, and I was left almost totally on my own resources to deal with the long-lasting pain and disability.
Truly, I felt seduced and abandoned!
(Later, as noted at http://www.joansbackbonedisaster.com/2018/09/trying-to-warn.html, Dr. B. tried to remedy this failure to warn situation to some extent, but I believe far more stringent methods are in order, and that Amgen should bear some responsibility for this, for warning patients specifically about the danger of delay.)
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