https://www.medscape.com/viewcollection/34648
An especially important one discussed rebound fractures following discontinuation of Denosumab - which is Prolia.
###
Saturday, December 15, 2018
Stop Prolia at your own Risk!
The 2018 Annual Meeting of the American Society for Bone and Mineral Research ( ASBMR) featured many important reports about osteoporosis drugs.
https://www.medscape.com/viewcollection/34648
An especially important one discussed rebound fractures following discontinuation of Denosumab - which is Prolia.
https://www.medscape.com/viewcollection/34648
An especially important one discussed rebound fractures following discontinuation of Denosumab - which is Prolia.
Wednesday, December 12, 2018
CHECKING IN WITH AMGEN -- AGAIN!
Every few weeks I check in with Amgen -- the manufacturer of Prolia -- to tell them how I'm doing.
I'm sure they are concerned so I want to let them know!
I use the number they give for this purpose: 800-772-6436 which is staffed by nurses and pharmacists.
They record calls (which is what I want them to do) and they often say they will report this to their "safety" division, but they don't give advice. They just tell you to "ask your doctor" and in my case that's turned out to be something of a blind alley in terms of getting the information I most need!
However I continue to call Amgen on a fairly regular schedule, especially since their lawyer called me (as noted elsewhere on these pages) and told me not to do so. Recently my goal was to let them know that while I can now actually stand or sit for an hour now without too much pain, much more than that is still painful. In the interest of keeping what happened to me from happening to others I want to make it very clear that I think the word "delay" belongs on their warnings about Prolia.
They do mention in their professional labeling that "stopping" Prolia can result in vertebral fractures, but nowhere could I find the word "delay."
They warn not to stop (or discontinue) Prolia without informing their health care advisor. But in my case, this drug was delayed BECAUSE of my health care provider!
And never once in the time before that had I considered "stopping" the drug.
When I have shared this with the Amgen phone personnel I have never gotten a good answer.
I have tried to explain that for most speakers of the English language the words "stopping" or "discontinuing" connote both intentionality and permanency. ("Have you stopped smoking?" Most people who say they have stopped smoking do not INTEND to start again. True, they might smoke in the future, but this was generally NOT their intent when they STOPPED.)
I would say that whatever special connotation the words "stop" or "discontinue" might have for doctors, for most patients these words used in connection with a regular activity imply termination, not delay, of an action.
I never intended to STOP Prolia. Although I had some problems with it (the back pain, the itching skin, the issues getting needed dental work done) it appeared to be of some value in slowing bone loss, at least as reflected in DEXA scores (although this may not be such a great indicator as I'm coming to learn).
My Prolia injection scheduled for late January 2018, was delayed as noted before because of a change in medical personnel at the U. of C. and no one there seemed to have the time or inclination to take a minute to give me a call and say "Hey, Joan, even though you don't have a doctor here right now, come on in at the scheduled time for your Prolia shot, because even a short delay could leave you with broken bones and lengthy or even permanent pain and disability!"
Instead I was simply informed at that my doctor had left, that my late January appointment was cancelled and the new doctor would not be able to see me until late in May. And sometime in early March my bones broke in a painful collapse!
So you can imagine the urgency when, after asking several times earlier and getting no definitive answer, I finally asked the people at the Amgen phone number (800-772-6436) several times until I got a YES for this specific request: "Will you tell your "safety team" that you received a specific request that the word 'delay' be included in labeling." I had to ask this representative three times before she finally said that she would do this.
I asked her who was on their "safety team" and she said she was not authorized to give that information. I'd like to reach them and if anyone has ideas about this let me know! I'd like to know what they are doing about this important safety matter!
I'm sure they are concerned so I want to let them know!
I use the number they give for this purpose: 800-772-6436 which is staffed by nurses and pharmacists.
They record calls (which is what I want them to do) and they often say they will report this to their "safety" division, but they don't give advice. They just tell you to "ask your doctor" and in my case that's turned out to be something of a blind alley in terms of getting the information I most need!
However I continue to call Amgen on a fairly regular schedule, especially since their lawyer called me (as noted elsewhere on these pages) and told me not to do so. Recently my goal was to let them know that while I can now actually stand or sit for an hour now without too much pain, much more than that is still painful. In the interest of keeping what happened to me from happening to others I want to make it very clear that I think the word "delay" belongs on their warnings about Prolia.
They do mention in their professional labeling that "stopping" Prolia can result in vertebral fractures, but nowhere could I find the word "delay."
They warn not to stop (or discontinue) Prolia without informing their health care advisor. But in my case, this drug was delayed BECAUSE of my health care provider!
And never once in the time before that had I considered "stopping" the drug.
When I have shared this with the Amgen phone personnel I have never gotten a good answer.
I have tried to explain that for most speakers of the English language the words "stopping" or "discontinuing" connote both intentionality and permanency. ("Have you stopped smoking?" Most people who say they have stopped smoking do not INTEND to start again. True, they might smoke in the future, but this was generally NOT their intent when they STOPPED.)
I would say that whatever special connotation the words "stop" or "discontinue" might have for doctors, for most patients these words used in connection with a regular activity imply termination, not delay, of an action.
I never intended to STOP Prolia. Although I had some problems with it (the back pain, the itching skin, the issues getting needed dental work done) it appeared to be of some value in slowing bone loss, at least as reflected in DEXA scores (although this may not be such a great indicator as I'm coming to learn).
My Prolia injection scheduled for late January 2018, was delayed as noted before because of a change in medical personnel at the U. of C. and no one there seemed to have the time or inclination to take a minute to give me a call and say "Hey, Joan, even though you don't have a doctor here right now, come on in at the scheduled time for your Prolia shot, because even a short delay could leave you with broken bones and lengthy or even permanent pain and disability!"
Instead I was simply informed at that my doctor had left, that my late January appointment was cancelled and the new doctor would not be able to see me until late in May. And sometime in early March my bones broke in a painful collapse!
So you can imagine the urgency when, after asking several times earlier and getting no definitive answer, I finally asked the people at the Amgen phone number (800-772-6436) several times until I got a YES for this specific request: "Will you tell your "safety team" that you received a specific request that the word 'delay' be included in labeling." I had to ask this representative three times before she finally said that she would do this.
I asked her who was on their "safety team" and she said she was not authorized to give that information. I'd like to reach them and if anyone has ideas about this let me know! I'd like to know what they are doing about this important safety matter!
Sunday, December 2, 2018
I HAVE QUESTIONS; HOW ARE THEY ANSWERED?
I've always asked questions. In the end, I'm the one who lives or dies, or, in my current state, is rendered a semi-invalid, by the information I am receiving. So yes, I ask questions. I only wish I had asked more questions about Prolia before agreeing to it.
Sometimes doctors tell me to "trust" them. I remind them as politely as I can that trust is earned, not given. (That usually is not received well. One doctor "fired" me for saying words to that effect. So I try my best to tread more carefully.)
I realize that doctors do not have the time to answer a lot of questions, so I'm often left pretty much in the dark, especially when different doctors suggest different approaches.
I recently asked a doctor questions about a drug and was asked, in reply, if I was "getting information from the internet." This was said in way that made me think that this doctor did not think much of the internet as a source of information.
But what am I to do, given the following?
1. Doctors' time is generally limited, so often the only information about a drug is from the manufacturer via their labeling. My experience has been that a search for information should not stop with the manufacturer's information. While this may be "approved" by the Food and Drug Administration (FDA), it may not tell the full story. (For instance, I never knew beforehand that starting Prolia, as a practical matter, amounted to a "life sentence.") So to fill in these gaps I must rely on other resources. Today, these resources are mostly on the internet.
2. Most local medical libraries are not open to the public, and in any event, traveling to them and using Index Medicus and taking notes and xeroxing pages in a library is time consuming and expensive. Plus I'm not in great shape (as noted elsewhere on these pages) so I appreciate the internet based systems now available that I can access from my home.
Here, in no particular order of importance are some of the places I've found information:
1. First and foremost of these internet resources is NCBI (the National Center for Biological Information) run by the Federal government as part of the system that includes the databases of the National Library of Medicine, carrying thousands of medical journals and other resources.
https://www.ncbi.nlm.nih.gov
When I find applicable articles here I read their abstracts (and the entire article if it is online) and, if possible, ask the doctor about about things I don't understand. Some journals are more useful and reliable than others, and here too a doctor can be helpful.
(Note: In the '80's and '90's I used NCBI's predecessor called "MEDLARS" (Medical Literature Analysis and Retrieval System) also operated by the Federal government. It had its own direct computer-based access via modem to National Library of Medicine. But this system has long since been replaced by the internet-based NCBI system above.)
2. Medical social media websites where people post their own experiences with various kinds of treatments offer information mostly from lay people. Without knowing more about those posting, it may be hard to evaluate this information, but, especially when you see enough posts about the same kinds of issues, this information could be valuable. I have listed some of these in this blog at: http://www.joansbackbonedisaster.com/2018/09/health-unlocked.html
3. Popular media. Many national newspapers and magazines that publish on the internet have excellent health and medical reporters on staff so that when stories appear about specific matters it can justify asking more questions. This is why I posted some articles from the New York Times about some surgical approaches to vertebral fractures like the ones I suffered following the Prolia delay. https://www.blogger.com/blogger.g?blogID=5152345338722870195#editor/target=post;postID=7271280824993248116;onPublishedMenu=allposts;onClosedMenu=allposts;postNum=8;src=postname.
4. Websites of public interest organizations often have useful information. You have to know your organization, but many have knowledgeable experts who are careful about what they write. Public Citizen is one example. See posts about them elsewhere in this blog. I wish I'd paid more attention to them earlier.
5. Websites devoted to specific medical topics. Again, you need to evaluate them carefully, but I've featured a few I've found helpful ones on osteoporosis in this blog.
http://www.joansbackbonedisaster.com/2018/10/some-helpful-websites_14.html
6. Books, both popular and technical can offer some information. Popular books depend on the ability of the author to accurately interpret and convey scientific information. I've mentioned some that I've found helpful, but once again, I am not endorsing any of them or recommending following them to anyone. Here are a few I've been reading: http://www.joansbackbonedisaster.com/2018/11/some-books-im-reading.html
7. Miscellaneous sources that might not be as well vetted. These are still worth looking at because they can offer clues leading to finding information from more reliable sources.
So yes, Dear Doctor, I get some of my information from the internet. As noted, I've listed some resources for this elsewhere.
Please note that nothing here is an endorsement. I am not qualified to recommend any of these sources to anyone. Those with questions may just have to puzzle it out for themselves, or, if they are very lucky, find qualified experts to help them in this regard.
Sometimes doctors tell me to "trust" them. I remind them as politely as I can that trust is earned, not given. (That usually is not received well. One doctor "fired" me for saying words to that effect. So I try my best to tread more carefully.)
I realize that doctors do not have the time to answer a lot of questions, so I'm often left pretty much in the dark, especially when different doctors suggest different approaches.
I recently asked a doctor questions about a drug and was asked, in reply, if I was "getting information from the internet." This was said in way that made me think that this doctor did not think much of the internet as a source of information.
But what am I to do, given the following?
1. Doctors' time is generally limited, so often the only information about a drug is from the manufacturer via their labeling. My experience has been that a search for information should not stop with the manufacturer's information. While this may be "approved" by the Food and Drug Administration (FDA), it may not tell the full story. (For instance, I never knew beforehand that starting Prolia, as a practical matter, amounted to a "life sentence.") So to fill in these gaps I must rely on other resources. Today, these resources are mostly on the internet.
2. Most local medical libraries are not open to the public, and in any event, traveling to them and using Index Medicus and taking notes and xeroxing pages in a library is time consuming and expensive. Plus I'm not in great shape (as noted elsewhere on these pages) so I appreciate the internet based systems now available that I can access from my home.
Here, in no particular order of importance are some of the places I've found information:
1. First and foremost of these internet resources is NCBI (the National Center for Biological Information) run by the Federal government as part of the system that includes the databases of the National Library of Medicine, carrying thousands of medical journals and other resources.
https://www.ncbi.nlm.nih.gov
When I find applicable articles here I read their abstracts (and the entire article if it is online) and, if possible, ask the doctor about about things I don't understand. Some journals are more useful and reliable than others, and here too a doctor can be helpful.
(Note: In the '80's and '90's I used NCBI's predecessor called "MEDLARS" (Medical Literature Analysis and Retrieval System) also operated by the Federal government. It had its own direct computer-based access via modem to National Library of Medicine. But this system has long since been replaced by the internet-based NCBI system above.)
2. Medical social media websites where people post their own experiences with various kinds of treatments offer information mostly from lay people. Without knowing more about those posting, it may be hard to evaluate this information, but, especially when you see enough posts about the same kinds of issues, this information could be valuable. I have listed some of these in this blog at: http://www.joansbackbonedisaster.com/2018/09/health-unlocked.html
3. Popular media. Many national newspapers and magazines that publish on the internet have excellent health and medical reporters on staff so that when stories appear about specific matters it can justify asking more questions. This is why I posted some articles from the New York Times about some surgical approaches to vertebral fractures like the ones I suffered following the Prolia delay. https://www.blogger.com/blogger.g?blogID=5152345338722870195#editor/target=post;postID=7271280824993248116;onPublishedMenu=allposts;onClosedMenu=allposts;postNum=8;src=postname.
4. Websites of public interest organizations often have useful information. You have to know your organization, but many have knowledgeable experts who are careful about what they write. Public Citizen is one example. See posts about them elsewhere in this blog. I wish I'd paid more attention to them earlier.
5. Websites devoted to specific medical topics. Again, you need to evaluate them carefully, but I've featured a few I've found helpful ones on osteoporosis in this blog.
http://www.joansbackbonedisaster.com/2018/10/some-helpful-websites_14.html
6. Books, both popular and technical can offer some information. Popular books depend on the ability of the author to accurately interpret and convey scientific information. I've mentioned some that I've found helpful, but once again, I am not endorsing any of them or recommending following them to anyone. Here are a few I've been reading: http://www.joansbackbonedisaster.com/2018/11/some-books-im-reading.html
7. Miscellaneous sources that might not be as well vetted. These are still worth looking at because they can offer clues leading to finding information from more reliable sources.
So yes, Dear Doctor, I get some of my information from the internet. As noted, I've listed some resources for this elsewhere.
Please note that nothing here is an endorsement. I am not qualified to recommend any of these sources to anyone. Those with questions may just have to puzzle it out for themselves, or, if they are very lucky, find qualified experts to help them in this regard.
Wednesday, November 28, 2018
SOME BOOKS I'M READING
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,
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,
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
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| In my case, my back; but who's counting? |
Thinking about Prolia? Think again!
Don't wind up like Me!