Please note - I am not endorsing these books or any particular approach in them. However I am reading them and finding them interesting, informative and potentially useful. Most are available in Amazon's) Kindle as well. This section is a work in progress - please check it out from time to time!
I wish I had some of the information here years ago when my osteoporosis was taking a scary downward turn and before I started Prolia.
1. Dr. Lani's No-Nonsense Bone Health Guide by Lani Simson, DC, CCD, forward by Claude D. Arnaud, MD, FACE. (c) 2014. Paperback, 320 pp. In paperback at Amazon for $13.24.
https://www.amazon.com/Lanis-No-Nonsense-Bone-Health-Guide/dp/0897936612/ref=sr_1_1?ie=UTF8&qid=1543456424&sr=8-1&keywords=dr+lani%27s+no+nonsense+bone+health+guide
This book explains many of the tests your doctor may be doing and also has information about the various treatment approaches to osteoporosis. In general the author prefers natural approaches to pharmaceutical treatment. In general contains a lot of information about various medical approaches to osteoporosis; information that I did not have years ago when dealing with osteoporosis and starting Prolia. If I'd had it I think I would have been much more aggressive in pursuing non Rx approaches.
2. Your Bones by Lara Pizzorno, M.A., L.M.T., with forward by Jonathan V. Wright, M.D.
(c) 2013, 496 pp. In paperback at Amazon for $12.00.
https://www.amazon.com/Your-Bones-Prevent-Osteoporosis-Life_Naturally/dp/160766013X/ref=sr_1_1?ie=UTF8&qid=1543456938&sr=8-1&keywords=your+bones+by+lara+pizzorno
Like Dr. Lani, Ms. Pizzorno takes a more natural approach to osteoporosis. Dr. Wright is a leading advocate of alternative healing modalities and Ms. Pizzorno cites her own experience here. However in nearly 500 pages she covers a lot of ground and offers a lot of information about bones, treatment options, etc.
Both of the above books offer their sources that you might find online, and both certainly offer ideas that you could discuss with your own medical advisor. Consider buying the Kindle versions to facilitate checking for online references. (Not all references are online but some are and this is a convenient way to find them.)
3. I would be remiss not to mention Susan Brown's book Better Bones, Better Body, published in 2000. It's a bit out of date now in terms of discussing some of the newer treatment options, but Dr. Brown still has much to offer.
In paperback at Amazon for $15.75 Not available as a Kindle book. https://www.amazon.com/Better-Bones-Body-Estrogen-Calcium/dp/0658002899/ref=sr_1_1?ie=UTF8&qid=1543457329&sr=8-1&keywords=susan+brown+better+bones
Dr. Brown has a diverse background and offers information and services relating to osteoporosis.
For more on this, see her website:
https://www.betterbones.com/about/susan-e-brown-phd-professional-training-and-experience/
4. Books on Exercise by Margaret Martin of Melioguide at Amazon:
a. Exercise for Better Bones: (2015) $15 in paperback at Amazon
https://www.amazon.com/dp/0991912543/ref=sspa_dk_detail_1?psc=1
b. Yoga for Better Bones: (2016) $15 in paperback at Amazon
https://www.amazon.com/dp/0991912578/ref=sspa_dk_detail_0?psc=1
These books are important because exercise plays a big role in bone strength, and and can be helpful even post-menopause, but certain movements can damage fragile bones. Margaret Martin (of Melioguide) offers exercises that accentuate the positive and hopefully eliminate the negative. But here again, consult your own health care advisor before undertaking an exercise regimen.
5. The Complete Book of Bone Health by Diane L. Schneider, M.D. (2011). 491 pp. $15.00 in paperback at Amazon
https://www.amazon.com/Complete-Book-Bone-Health/dp/1616144351/ref=sr_1_2?keywords=Complete+book+of+bone+health&qid=1552793802&s=gateway&sr=8-2
I have not had a chance to read through this encyclopedic work of nearly 500 pages yet, but at first glance it covers a LOT of ground briefly.
This book would be useful for learning the vocabulary of osteoporosis and for basic information about many different diagnostic procedures and medical treatments. The author is one of the co-founders of the website http://www.4bonehealth.org,
Wednesday, November 28, 2018
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!
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!
Tuesday, November 20, 2018
THE PROLIA EVIDENCE KEEPS MOUNTING
The Prolia heartbreak continues, judging by recent posts in the website Lawyers and Settlements.
https://www.lawyersandsettlements.com/lawsuit/prolia-fda-reporting-system-cutaneous-adverse.html
In response to an article entitled Prolia Linked to Serious Adverse Events in FDA Reporting System, a flood of reader comments offered still more likely cases of injury attributable to this drug.
Are people making up these stories? Are these accounts properly vetted? Or are they largely believable accounts of huge suffering associated with this drug?
It's all online at the above website. Readers can decide for themselves.
Also, see this report from the Annenberg Center for Health Journalism deriding the failure of Amgen to come clean about the risk of Prolia, their osteoporosis "wonder" drug!
https://www.centerforhealthjournalism.org/2015/03/21/prolia-another-wonder-drug-wasnt
https://www.lawyersandsettlements.com/lawsuit/prolia-fda-reporting-system-cutaneous-adverse.html
In response to an article entitled Prolia Linked to Serious Adverse Events in FDA Reporting System, a flood of reader comments offered still more likely cases of injury attributable to this drug.
Are people making up these stories? Are these accounts properly vetted? Or are they largely believable accounts of huge suffering associated with this drug?
It's all online at the above website. Readers can decide for themselves.
Also, see this report from the Annenberg Center for Health Journalism deriding the failure of Amgen to come clean about the risk of Prolia, their osteoporosis "wonder" drug!
https://www.centerforhealthjournalism.org/2015/03/21/prolia-another-wonder-drug-wasnt
Friday, November 9, 2018
PROGRESS NOTE: STOPPING PROLIA -- A PERSONAL STORY
Progress Note:
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
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
Thursday, November 8, 2018
A TIMELY (FOR ME) CARTOON
 |
| In my case, my back; but who's counting? |
Thinking about Prolia? Think again!
Don't wind up like Me!
Sunday, October 14, 2018
TRYING A TENS DEVICE
My physical therapist suggested I try a TENS device to help with pain management and let me have one to try.
TENS is an acronym for Transcutaneous Electrical Nerve Stimulation.
Mine is about the size of my cell phone with wires extending to small "sticky" electrode patches which the PT showed me where to place on my back. It can run on either regular house current or 9 volt batteries, the latter allowing me to be somewhat more mobile.
The basic principle of TENS is that its vibrations interfere with the pain signal. I've heard that it works on about 50% of the people 50% of the time, but I thought it was worth a try, as the pain I'm experiencing after about an hour or two of sitting or standing is unrelentingly intolerable, and this definitely limits my activity.
So far it seems to be working well enough. The pain isn't completely gone but it's bearable. When it gets bad I turn it on for about 15 minutes and I do feel better. And as as I'm told sometimes happens, this "better" lasts for a while longer. When the pain returns I give it another session.
While I don't much care for having wires running from my body to yet another thing to haul around in my purse, the TENS device has given me a little more mobility. And it does not impair driving.
By no means am I back to my usual functioning self, but it's given me some ability to do some things that were simply too painful because they involved sitting or standing for more than an hour or two.
TENS is an acronym for Transcutaneous Electrical Nerve Stimulation.
Mine is about the size of my cell phone with wires extending to small "sticky" electrode patches which the PT showed me where to place on my back. It can run on either regular house current or 9 volt batteries, the latter allowing me to be somewhat more mobile.
The basic principle of TENS is that its vibrations interfere with the pain signal. I've heard that it works on about 50% of the people 50% of the time, but I thought it was worth a try, as the pain I'm experiencing after about an hour or two of sitting or standing is unrelentingly intolerable, and this definitely limits my activity.
So far it seems to be working well enough. The pain isn't completely gone but it's bearable. When it gets bad I turn it on for about 15 minutes and I do feel better. And as as I'm told sometimes happens, this "better" lasts for a while longer. When the pain returns I give it another session.
While I don't much care for having wires running from my body to yet another thing to haul around in my purse, the TENS device has given me a little more mobility. And it does not impair driving.
By no means am I back to my usual functioning self, but it's given me some ability to do some things that were simply too painful because they involved sitting or standing for more than an hour or two.
Monday, September 24, 2018
INADEQUATE WARNINGS AND AN IGNORED MODEL
It certainly appears that Amgen is not about to warn patients of the consequences of even a short delay in getting the semiannual Prolia injections.
See, for example, https://www.ispot.tv/ad/w8q3/prolia-hiking-featuring-blythe-danner.
When you get a Prolia injection, the nurse may give you a card like this:
As a warning, this card has no more utility than the little card you get for your next dental cleaning! No warning whatsoever about the danger of even a short delay. (The only thing added besides the date was the "+ 1 week" to assure Medicare payment!)
So I urged Dr. B. to at least warn her patients.
She did so by means of this red-bordered card she said she now gives patients on Prolia.
This is one doctor's apparent effort to warn, but it cannot begin to have the outreach of a large pharmaceutical manufacturer that advertises on prime time TV with a well-known actor touting the vaunted advantages of Prolia.
However, this doctor's attempt fails to mention:
1. The danger of even short delays, and,
2. information about what to do if unable to keep an appointment, and,
3. What to do and, most importantly, WHOM TO CALL if you are blocked by the "front desk" for ANY reason, as I was when I tried to explain the importance of getting that Prolia shot on time even though the new doctor did not have an opening for an appointment yet!
I tried to explain this in the draft handout below.
It is important, for example, for a large medical center especially, to provide a phone number should an appointment change be needed, answered by staff prepared to warn patients of the consequences of delay.
This draft leaves space for such a number to be included and gives a stronger, much clearer warning!
If every doctor administering Prolia gave patients a warning along these lines, including the name and telephone number for someone who could intervene if, for any reason the "front desk" prevented the administration of Prolia on time, I believe much suffering could be averted. Mine certainly would have been!
Also, patient records and other files should be RED FLAGGED to alert ALL staff (including schedulers) that this patient is on Prolia and that their injections must not be delayed.
I specifically asked about this when I was told that the new doctor could not see me for months after my shot was due. I was told that I would have to wait until I saw her to get that shot. I assumed this was correct information. It wasn't. And it left me with severe pain and disability now nearly entering a third year.
So while patients would benefit from a properly worded reminder card, office staff WORKING UNDER THE DIRECTION OF THE MEDICAL PROFESSIONALS must be prepared to convey proper information, instructions and reminders as well!
Also, in the wake of many cases like mine that I am learning about, Amgen needs to take necessary steps too, beginning with using the five letter word word "DELAY" in its warnings to patients!
Medical professionals may understand that words like "discontinuation" and "stopping" are enough, but patients information definitely requires warnings using the word DELAY as well.
This is why -- even though I'm just one person, and in pretty bad shape even to be sitting up to do this -- I'm doing what I can to get the word out to as many people as I can reach. Because no one else seems to be doing it!
This blog is part of that effort!
See, for example, https://www.ispot.tv/ad/w8q3/prolia-hiking-featuring-blythe-danner.
When you get a Prolia injection, the nurse may give you a card like this:
So I urged Dr. B. to at least warn her patients.
She did so by means of this red-bordered card she said she now gives patients on Prolia.
This is one doctor's apparent effort to warn, but it cannot begin to have the outreach of a large pharmaceutical manufacturer that advertises on prime time TV with a well-known actor touting the vaunted advantages of Prolia.
However, this doctor's attempt fails to mention:
1. The danger of even short delays, and,
2. information about what to do if unable to keep an appointment, and,
3. What to do and, most importantly, WHOM TO CALL if you are blocked by the "front desk" for ANY reason, as I was when I tried to explain the importance of getting that Prolia shot on time even though the new doctor did not have an opening for an appointment yet!
I tried to explain this in the draft handout below.
It is important, for example, for a large medical center especially, to provide a phone number should an appointment change be needed, answered by staff prepared to warn patients of the consequences of delay.
This draft leaves space for such a number to be included and gives a stronger, much clearer warning!
/////////////////////////////////////////////
[To be given to EVERY Patient with EVERY Prolia injection]
DEAR PATIENT:
Please READ this CAREFULLY!
Ask your DOCTOR to explain anything you do not understand!
You have been prescribed a drug called PROLIA®.
This drug may help keep your bones strong.
Your Doctor can explain this to you.
PROLIA must be injected every six months.
Your next injection is scheduled for [date].
YOU MUST GET YOUR PROLIA SHOT
ON TIME!!!
EVEN A SHORT DELAY CAN RESULT IN PAINFUL BROKEN BONES!!!!
ON TIME!!!
EVEN A SHORT DELAY CAN RESULT IN PAINFUL BROKEN BONES!!!!
IF FOR ANY REASON YOU CANNOT KEEP YOUR APPOINTMENT FOR YOUR NEXT PROLIA SHOT ON [DATE], CALL (###) TO SET UP ANOTHER TIMELY APPOINTMENT.
IF YOU ARE PREVENTED BY ANYONE IN THIS OFFICE FROM SCHEDULING YOUR NEXT PROLIA SHOT ON TIME, CALL (###) ###-#### AS SOON AS POSSIBLE TO ARRANGE FOR A TIMELY PROLIA INJECTION.
IF YOU ARE PREVENTED BY ANYONE IN THIS OFFICE FROM SCHEDULING YOUR NEXT PROLIA SHOT ON TIME, CALL (###) ###-#### AS SOON AS POSSIBLE TO ARRANGE FOR A TIMELY PROLIA INJECTION.
///////////////////////////////////////////////////////////
Also, patient records and other files should be RED FLAGGED to alert ALL staff (including schedulers) that this patient is on Prolia and that their injections must not be delayed.
I specifically asked about this when I was told that the new doctor could not see me for months after my shot was due. I was told that I would have to wait until I saw her to get that shot. I assumed this was correct information. It wasn't. And it left me with severe pain and disability now nearly entering a third year.
So while patients would benefit from a properly worded reminder card, office staff WORKING UNDER THE DIRECTION OF THE MEDICAL PROFESSIONALS must be prepared to convey proper information, instructions and reminders as well!
Also, in the wake of many cases like mine that I am learning about, Amgen needs to take necessary steps too, beginning with using the five letter word word "DELAY" in its warnings to patients!
Medical professionals may understand that words like "discontinuation" and "stopping" are enough, but patients information definitely requires warnings using the word DELAY as well.
This is why -- even though I'm just one person, and in pretty bad shape even to be sitting up to do this -- I'm doing what I can to get the word out to as many people as I can reach. Because no one else seems to be doing it!
This blog is part of that effort!
Monday, September 3, 2018
HOW MUCH DID TV ADS COST? HOW MUCH WOULD WORDS OF WARNING COST?
Prime time TV now carries ads starring actress Blythe Danner along with other healthy looking women enjoying happy, active lives because they are on Prolia.
You can see these ads here: https://www.ispot.tv/brands/dHV/prolia
How much did these TV ads cost? How much would it have cost to add warnings about delay as well as warnings that once ON Prolia there is no protocol (according to Amgen representatives) for getting off?
You can see these ads here: https://www.ispot.tv/brands/dHV/prolia
How much did these TV ads cost? How much would it have cost to add warnings about delay as well as warnings that once ON Prolia there is no protocol (according to Amgen representatives) for getting off?
