Jean Nidetch died a few years ago at age 91. Remember her? Over fifty years ago she created a revolution in the bariatric world when she founded Weight Watchers (r) (hereinafter "WW.") Whatever one may think of WW's diets or other features over the years, the WW model was remarkably successful in helping millions of people lose weight. Its model of regular meetings and other supports is now applied in other chronic disease settings as well, and I submit that this is a model that could be applied to address osteopenia/osteoporosis.
I would propose something along similar lines called Bone Builders (BB). (Or a similar name if that is already covered by copyright or trademark).
WW meetings, held weekly in convenient locations, were led by trained lay people, and charged a small meeting fee. The meeting model was a lecture by the leader, followed by opportunities for individuals to air their success and problems, and receive applause, ideas and encouragement from others in the group. Group members were asked to maintain individual food intake records in notebooks provided for this purpose. Individual weekly "weigh ins" conducted with privacy at meeting sites allowed members to keep this record of their progress.
All of these except the last would be easily replicable in a BB group setting.
BB lectures could be by qualified professionals, not only M.D.s, but dietician, exercise professionals and others, followed by opportunities for participants to as questions, and air their successes and problems.
BB could offer the many demonstrated advantages of social support in chronic disease settings (and I would submit that osteopenia/osteoporosis is a chronic disease affecting a large population), allowing participants to feel less alone and to get new ideas and constant encouragement in a guided setting about nutrition and exercise.
Just a thought from someone who really could have used this years ago when it could have made a world of difference!
.
Sunday, December 30, 2018
Friday, December 28, 2018
ARTICLES ON DISCONTINUING PROLIA -- INCLUDING "DELAY!"
These are some articles that have appeared in medical journals in the past few years about the dangers of discontinuing Prolia. You an find most of them on the National Library of Medicine website - https://www.ncbi.nlm.nih.gov . These will be in the databases Pub Med and Pub Med Central (abbreviated as PMC) NCBI stands for National Center for Biological Information run by National Institutes of Health.
Some articles are only available as abstracts. Other are available in full text at Pub Med or Pub Med Central. If you go to the publishers you may have to pay. But sometimes if you write to an author they will send you full text (just don't ask authors for medical advice). I've include author information and you can generally Google them to get more info.
Please note that it was never my intention to "discontinue" Prolia. However, nowhere that I can find in Amgen's information about Prolia is the word "delay." As I learned too late, the concept of "delay" appears to be subsumed under the heading of "discontinuing" (or "stopping.") While this might make sense to medical professionals, most lay people would not interpret "delay" as being the same as "stopping" or "discontinuation."
Since the topic of this blog is what happened when my Prolia shot was delayed by the prescribing entities, it seems appropriate to include articles about "stopping" or "discontinuing" herein. Again, these are in no way intended as medical advice. Medical advice should come from your qualified medical advisor.
Here are just a few citations, followed by abstracts in some instances, and one link to full text.
Just added in 2020 (published in 2019):
Current Osteoporosis Reports
Other Publications:
Some articles are only available as abstracts. Other are available in full text at Pub Med or Pub Med Central. If you go to the publishers you may have to pay. But sometimes if you write to an author they will send you full text (just don't ask authors for medical advice). I've include author information and you can generally Google them to get more info.
Please note that it was never my intention to "discontinue" Prolia. However, nowhere that I can find in Amgen's information about Prolia is the word "delay." As I learned too late, the concept of "delay" appears to be subsumed under the heading of "discontinuing" (or "stopping.") While this might make sense to medical professionals, most lay people would not interpret "delay" as being the same as "stopping" or "discontinuation."
Since the topic of this blog is what happened when my Prolia shot was delayed by the prescribing entities, it seems appropriate to include articles about "stopping" or "discontinuing" herein. Again, these are in no way intended as medical advice. Medical advice should come from your qualified medical advisor.
Here are just a few citations, followed by abstracts in some instances, and one link to full text.
—————————————————————————
Current Osteoporosis Reports
https://doi.org/10.1007/s11914-019-00502-4THERAPEUTICS AND MEDICAL MANAGEMENT (S JAN DE BEUR AND B CLARKE, SECTION
EDITORS)
Stopping Denosumab
Olivier Lamy1,2 & Delphine Stoll1 & Bérengère Aubry-Rozier1,3 & Elena Gonzalez Rodriguez1,4
# Springer Science+Business Media, LLC, part of Springer Nature 2019
Abstract
Purpose of Review Denosumab discontinuation is associated with a rebound effect manifesting by an increased risk of multiple
spontaneous vertebral fractures. The purpose of this review is to (1) better characterize this risk and (2) find solutions to avoid it.
Recent Findings In the absence of a potent bisphosphonate prescription at denosumab discontinuation, the frequency of multiple
vertebral fractures is common or frequent (≥ 1/100 and < 1/10). In five recent case series, the median number of vertebral
fractures was 5 within 7 to 20 months (median 11) after the last denosumab injection. Prescribing bisphosphonate before starting
denosumab and/or after stopping denosumab may reduce this risk. However, only small case series have evaluated these
strategies.
Summary After the second denosumab dose, there is a rebound effect with an increased risk of multiple vertebral fractures. A
potent bisphosphonate prescribed at denosumab discontinuation could reduce this risk. As denosumab discontinuation is characterized
by many uncertainties, denosumab is a second-line treatment for osteoporosis. Studies are urgently needed to define the
management of denosumab discontinuation.
Keywords Denosumab discontinuation . Osteoporosis . Rebound effect . Spontaneousmultiple vertebral fractures
Other Publications:
Editorial:
This appeared in: Osteoporosis International
, Volume 27, Issue 5, pp 1677–1682| McClung MR
Cancel the denosumab holiday
E-pub 2016 Mar 1
Denosumab is the generic name for Prolia.
This is one of many related articles by McClung which you may find by clicking on his name.
Please note my own "denosumab holiday" was totally unintentional, as noted elsewhere in this blog, and the result of an entirely avoidable medical clerical error.
But the painful and disabling results were the same!
Author McClung's given address is:
- Oregon Osteoporosis Center, 2881 NW Cumberland Road, Portland, OR, 97210, USA. mmcclung@orost.com.
Review Articles:
1. Bone. 2017 Dec;105:11-17. doi: 10.1016/j.bone.2017.08.003. Epub 2017 Aug 5.
Discontinuation of Denosumab therapy for osteoporosis: A systematic review and position statement by ECTS.
Tsourdi E1, Langdahl B2, Cohen-Solal M3, Aubry-Rozier B4, Eriksen EF5, Guañabens N6, Obermayer-Pietsch B7, Ralston SH8, Eastell R9, Zillikens MC10.
(*See abstract of the above article below.)
2. Consult Pharm. 2018 Mar 1;33(3):142-151. doi: 10.4140/TCP.n.2018.142.
Effects of Denosumab After Treatment Discontinuation : A Review of the Literature.
Case Studies:
- J Clin Endocrinol Metab. 2017 Feb 1;102(2):354-358. doi: 10.1210/jc.2016-3170.
Severe Rebound-Associated Vertebral Fractures After Denosumab Discontinuation: 9 Clinical Cases Report.
Lamy O1, Gonzalez-Rodriguez E1, Stoll D1, Hans D1, Aubry-Rozier B1.
Osteoporos Int. 2016 May;27(5):1923-5. doi: 10.1007/s00198-015-3380-y. Epub 2015 Oct 28.
Severe spontaneous vertebral fractures after denosumab discontinuation: three case reports.
Osteoporos Int. 2016 May;27(5):1917-21. doi: 10.1007/s00198-015-3458-6. Epub 2015 Dec 22.
Rebound-associated vertebral fractures after discontinuation of denosumab-from clinic and biomechanics.
Popp AW1, Zysset PK2, Lippuner K3.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
*Abstract and more of the first review article above:
Bone. 2017 Dec;105:11-17. doi: 10.1016/j.bone.2017.08.003. Epub 2017 Aug 5.
Discontinuation of Denosumab therapy for osteoporosis: A systematic review and position statement by ECTS.
Tsourdi E1, Langdahl B2, Cohen-Solal M3, Aubry-Rozier B4, Eriksen EF5, Guañabens N6, Obermayer-Pietsch B7, Ralston SH8, Eastell R9, Zillikens MC10.
Author information
- 1
- Department of Medicine III, Technische Universität Dresden, Dresden, Germany; Center for Healthy Aging, Technische Universität Dresden, Dresden, Germany.
- 2
- Medical Department of Endocrinology, Aarhus University Hospital, Aarhus, Denmark.
- 3
- Inserm U1132 and University Paris-Diderot, Department of Rheumatology, Lariboisière Hospital, Paris, France.
- 4
- Centre of bone diseases, Lausanne University Hospital, Lausanne, Switzerland.
- 5
- Department of Clinical Endocrinology, Morbid Obesity and Preventive Medicine, Oslo University Hospital, Institute of Clinical Medicine, Oslo University, Oslo, Norway.
- 6
- Department of Rheumatology, Metabolic Bone Diseases Unit, Hospital Clínic, Barcelona, IDIBAPS, CIBERehd, University of Barcelona, Barcelona, Spain.
- 7
- Department of Internal Medicine, Division of Endocrinology and Diabetology, Medical University Graz, Austria; Center for Biomarker Research in Medicine (CBmed), Graz, Austria.
- 8
- Centre for Genomic and Experimental Medicine, MRC Institute of Genetics and Molecular Medicine, Western General Hospital, University of Edinburgh, Edinburgh, UK.
- 9
- Mellanby Centre for Bone Research, University of Sheffield, UK.
- 10
- Bone Center, Department of Internal Medicine, Erasmus MC, Rotterdam, The Netherlands. Electronic address: m.c.zillikens@erasmusmc.nl.
Abstract
INTRODUCTION:
The optimal duration of osteoporosis treatment is controversial. As opposed to bisphosphonates, denosumab does not incorporate into bone matrix and bone turnover is not suppressed after its cessation. Recent reports imply that denosumab discontinuation may lead to an increased risk of multiple vertebral fractures.
METHODS:
The European Calcified Tissue Society (ECTS) formed a working group to perform a systematic review of existing literature on the effects of stopping denosumab and provide advice on management.
RESULTS:
Data from phase 2 and 3 clinical trials underscore a rapid decrease of bone mineral density (BMD) and a steep increase in bone turnover markers (BTMs) after discontinuation of denosumab. Clinical case series report multiple vertebral fractures after discontinuation of denosumab and a renewed analysis of FREEDOM and FREEDOM Extension Trial suggests, albeit does not prove, that the risk of multiple vertebral fractures may be increased when denosumab is stopped due to a rebound increase in bone resorption.
CONCLUSION:
There appears to be an increased risk of multiple vertebral fractures after discontinuation of denosumab although strong evidence for such an effect and for measures to prevent the occurring bone loss is lacking. Clinicians and patients should be aware of this potential risk. Based on available data, a re-evaluation should be performed after 5years of denosumab treatment. Patients considered at high fracture risk should either continue denosumab therapy for up to 10years or be switched to an alternative treatment. For patients at low risk, a decision to discontinue denosumab could be made after 5years, but bisphosphonate therapy should be considered to reduce or prevent the rebound increase in bone turnover. However, since the optimal bisphosphonate regimen post-denosumab is currently unknown continuation of denosumab can also be considered until results from ongoing trials become available. Based on current data, denosumab should not be stopped without considering alternative treatment in order to prevent rapid BMD loss and a potential rebound in vertebral fracture risk.
Copyright © 2017 Elsevier Inc. All rights reserved.
KEYWORDS:
Denosumab; Discontinuation; Fractures; Osteoporosis treatment; Position paper
PMID: 28789921 DOI: 10.1016/j.bone.2017.08.003
[Indexed for MEDLINE]
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
(Note: The following article received financial support from Amgen.
Osteoporos Int. 2017; 28(5): 1723–1732.
Published online 2017 Jan 31. doi: [10.1007/s00198-017-3919-1]
PMCID: PMC5391373
PMID: 28144701
Observations following discontinuation of long-term denosumab therapy
1,2 R. B. Wagman,3 P. D. Miller,4 A. Wang,3 and E. M. Lewiecki5
Author information Article notes Copyright and License information Disclaimer
Summary
Stopping denosumab after 8 years of continued treatment was associated with bone loss during a 1-year observation study in patients who were not prescribed osteoporosis treatment. Bone loss was attenuated in patients who began another osteoporosis therapy. Treatment to prevent bone loss upon stopping denosumab should be considered.
Go to:
Contributor Information
M. R. McClung, Phone: 1-503-929-9633, Email: moc.liamg@coo.gnulccmm.
R. B. Wagman, Email: moc.negma@namgawr.
P. D. Miller, Email: moc.loa@RBCCrelliM.
A. Wang, Email: moc.negma@gnawa.
E. M. Lewiecki, Email: moc.liamg@ikceiwelm.
Conflicts of interest
MRM is a consultant for Amgen Inc., Merck, and Radius Health and receives honoraria from Amgen Inc. and Merck. RBW and AW are employees of and holders of stock and/or stock options in Amgen Inc. PDM receives research grants from Alexion, Eli Lilly, Amgen Inc., Novartis, National Bone Health Alliance, Pfizer, University of Alabama, Boehringer Ingelheim, Merck, Merck Serono, and Radius Health and is a consultant for Grunenthal, Shionogi, Radius Health, Amgen Inc., and Eli Lilly. EML receives research grants from Amgen Inc., Eli Lilly, and Merck and is a consultant for Amgen Inc., Eli Lilly, Merck, and Radius Health.
Go to:
Financial support
This study was sponsored by Amgen Inc., Thousand Oaks, CA, USA.
And here's an article about Prolia issues in the FDA reporting system published in a Legal database, Lawyers and Settlements:
Prolia LInked to Serious Adverse Events in FDA Reporting System
Thursday, December 27, 2018
PROLIA PRESCRIBING INFORMATION FROM AMGEN -- 2018
Here is a link to the PRESCRIBING INFORMATION for Prolia published by Amgen and presumably approved by the FDA. But this link will bring you to the current version.
https://www.pi.amgen.com/~/media/amgen/repositorysites/pi-amgen-com/prolia/prolia_pi.ahsx
This is the "official" document (sometimes called "labeling") from the manufacturer.
You may not have been given a copy of this, but now you have it to study and ask questions about!
What I learned from Amgen's information:
The following is what learned the prescribing information Amgen sent me early in 2018 to tell them about my "backbone disaster:"
https://www.pi.amgen.com/~/media/amgen/repositorysites/pi-amgen-com/prolia/prolia_pi.ahsx
This is the "official" document (sometimes called "labeling") from the manufacturer.
You may not have been given a copy of this, but now you have it to study and ask questions about!
What I learned from Amgen's information:
The following is what learned the prescribing information Amgen sent me early in 2018 to tell them about my "backbone disaster:"
- 5.6 Multiple Vertebral Fractures (MVF) Following Discontinuation of Prolia Treatment
5.6 Multiple Vertebral Fractures (MVF) Following Discontinuation of Prolia Treatment
Following discontinuation of Prolia treatment, fracture risk increases, including the risk of multiple vertebral fractures. Cessation of Prolia treatment results in markers of bone resorption increasing above pretreatment values then returning to pretreatment values 24 months after the last dose of Prolia. In addition, bone mineral density returns to pretreatment values within 18 months after the last injection.[see Pharmacodynamics (12.2) and Clinical Studies (14.1)].
New vertebral fractures occurred as early as 7 months (on average 19 months) after the last dose of Prolia. Prior vertebral fracture was a predictor of multiple vertebral fractures after Prolia discontinuation. Evaluate an individual’s benefit-risk before initiating treatment with Prolia.
If Prolia treatment is discontinued, consider transitioning to an alternative antiresorptive therapy [see Adverse Reactions (6.1)].
Following discontinuation of Prolia treatment, fracture risk increases, including the risk of multiple vertebral fractures. Cessation of Prolia treatment results in markers of bone resorption increasing above pretreatment values then returning to pretreatment values 24 months after the last dose of Prolia. In addition, bone mineral density returns to pretreatment values within 18 months after the last injection.[see Pharmacodynamics (12.2) and Clinical Studies (14.1)].
New vertebral fractures occurred as early as 7 months (on average 19 months) after the last dose of Prolia. Prior vertebral fracture was a predictor of multiple vertebral fractures after Prolia discontinuation. Evaluate an individual’s benefit-risk before initiating treatment with Prolia.
If Prolia treatment is discontinued, consider transitioning to an alternative antiresorptive therapy [see Adverse Reactions (6.1)].
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Patients may not see this. But if they did, and saw the word "discontinuation" they would likely take this to mean stopping a drug with the intent not to return, not a short delay.
And even if they had this document (most patients don't) they might not get to the sentence "New vertebral fractures occurred as early as 7 months... ." Which means that just as my fractures did, they could occur at just one month after the next shot was due.
Also, while I showed evidence of old vertebral fractures, this was never pointed out to me as a risk factor here. And no one at the University of Chicago (U. of C.) took this into account to warn me during the change of doctors that created the delay that resulted in fractures. Nor was this information in the patient information about the drug that I occasionally received with my Prolia shots.
So if you are thinking about Prolia for yourself or a loved one, get an updated version of this document and read it carefully (you should be able to find it online) so you will be able to ask your doctor about anything you don't understand.
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
 |
| 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.