Here are some websites where I've found information about how to gain and/or retain strong bones. Anything in these websites that you would like to adopt for yourself should be checked with your own medical advisor.
1. Save Our Bones: https://saveourbones.com.
Produced by Vivian Goldschmidt, with a background in nutrition and biochemistry, this website offers a large array of information and programs with e-books you can buy and keep on your computer.
They also have some good information on exercise, but more of their content is about nutrition. You can learn a lot from their website, their e-mails (if you are on their mailing list) and from their programs sold at reasonable prices.
They may get back with answers to general questions as well.
2. MelioGuide: https://melioguide.com.
Produced by Margaret Martin, a physiotherapist, this website offers much information on exercise for building bone. Ms. Martin has produced several books and a DVD which you can find here or on Amazon and they may be helpful in developing an exercise program.
There are also posts on nutrition. If you sign in with your e-mail address you can receive updates. And she also has a free e-mail course on osteoporosis featuring daily videos, and a newsletter. Here's a recent e-mail on Vitamin K, for example:
https://mailchi.mp/melioguide/revised-and-updated-vitamin-k2-blog-post?e=9920207af1
3. Better Bones: www.betterbones.com.
This website is the work of Susan Brown, Ph.D.
You can read more about Dr. Brown here: https://www.betterbones.com/about/
Dr. Brown, whose doctorate is in anthropology, has has studied bone issues extensively and has many useful ideas at her website.
You can sign up for her weekly blog through the website.
Here is an especially important issue that I wish I had read before starting Prolia. Unfortunately this article was published in January 2018, six years after I went on Prolia and just before my Backbone Disaster. But if you are thinking about Prolia, have a look here:
https://www.betterbones.com/bone-drugs/prolia-bone-fractures/
4. OsteoDiet: http://osteodiet.com
This is a fine looking Word Press blog and a powerhouse of information gathered by Kathleen Alford, who recounts her own story about dealing with osteporosis, with many interesting posts I want to explore in more depth.
These posts go back to at least 2010 and how I wish I had seen this before succumbing to the blandishments of Prolia Pushers in 2012.
Thank you, Kathleen! This is a great contribution!
Monday, February 25, 2019
Thursday, February 21, 2019
SOME LIMERICKS, BECAUSE THEY RAISE MY SPIRITS!
The bright side of dealing with a year of disability and pain is that as I work to reclaim function and comfort in so many parts of my body, I'm reviewing long-forgotten anatomy!
As I watch my active life disappear and spend my days working to restore what I can of my body, I need to laugh at something! So writing these gives me a chuckle!
In the summer of 2018 my wonderful Physical Therapist Dr. Sanjoy Roy, who is helping me get my body back to some degree of pain-free utility, said I needed to stretch my Quadratus Lumborum muscle.
This muscle, known as the "Q.L.," is a large, trapezoidal, deep abdominal muscle. It is hard to find, but I'm working on it (along with a whole bunch of other exercises!)
This muscle, known as the "Q.L.," is a large, trapezoidal, deep abdominal muscle. It is hard to find, but I'm working on it (along with a whole bunch of other exercises!)
So here's what I wrote about it. Dr. Roy, this is dedicated to you!
A Roman who spoke at the Forum,
Said "I fear that my speeches may bore 'em!
People started to snore,
And one dropped to the floor,
And stretched out his Quadratus Lumborum!"
Not long after this, during the course of a dinner party, a dear friend who is an experienced naprapath thought I would benefit from stretching the iliopsoas muscles. These are a pair of muscles that wander around the hip and leg like a pair of inebriated rattlesnakes.
I think the stretches she showed me will help ease some of the pain I am experiencing now.
So Jane Fresne, this one is dedicated to you!
Anatomy studies are deep,
I think the stretches she showed me will help ease some of the pain I am experiencing now.
So Jane Fresne, this one is dedicated to you!
Anatomy studies are deep,
And students have schedules to keep.
They cried "Teacher, please show us,
The iliopsoas,
And then let us go home and sleep!"
They cried "Teacher, please show us,
The iliopsoas,
And then let us go home and sleep!"
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Here are a few I more I wrote about various anatomical features I've encountered, as I work through pain in other parts of my body, directly or indirectly connected with my Prolia disaster.
A Ligament Predicament
A lass had an awful predicament:
She’d injured her inguinal ligament.
Now her skirts, if you please.
Are worn down past her knees,
To conceal the resulting disfigurement!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
A Tendentious Limerick
A lass who had strained a quad tendon,
From too much heavy liftin’ and bendin’
Had a pain in her purse
That felt even worse,
From extreme Therapeutical Spendin’
This post is dedicated to anatomists everywhere!
This post is dedicated to anatomists everywhere!
Tuesday, February 12, 2019
THE DECISION-MAKING BALANCE OF PAIN
A year of pain occasioned by this Prolia-launched backbone disaster has required me to make hard decisions almost every day.
At first, when the pain was constant and nearly unbearable it was a decision about the opioid pain-killers I was offered. I declined these, thinking I would rather have pain from a broken back than a monkey on it. I do not regret that decision and am grateful that I did not have to do tasks requiring me to spend much time moving around.
I was also grateful that most of the time, lying flat on my back for about 15 minute would alleviate the pain.
But conversely more than about half an hour sitting up without excellent back support or standing brought great pain as if I were being crushed to death in some medieval torture device.
That time has now lengthened - I can spend a few hours each day (broken up by rests) upright, but this in no way brings me back to "how I was before."
Occasionally I try to attend an event that may (including travel time) keep me out of the house for longer than three or four hours with no opportunity to lie down.
But for every such event I need to decide: how badly do I want to go to endure hours of of crushing pain while keeping a smile on my face and basically ruining the enjoyment of the event?
Right now I'd so much rather stay home, flat on my back, than attend an event wearing the only clothing that covers my swollen, inflamed body without hurting, and having only my cane to support my weight from time to time if the crushing sensation gets too bad.
Has any good come out of this? Perhaps I've become more attuned to others dealing with pain. Perhaps I'll be a kinder, more sympathetic person. It may build my character. But mostly I'm just hurting.
At first, when the pain was constant and nearly unbearable it was a decision about the opioid pain-killers I was offered. I declined these, thinking I would rather have pain from a broken back than a monkey on it. I do not regret that decision and am grateful that I did not have to do tasks requiring me to spend much time moving around.
I was also grateful that most of the time, lying flat on my back for about 15 minute would alleviate the pain.
But conversely more than about half an hour sitting up without excellent back support or standing brought great pain as if I were being crushed to death in some medieval torture device.
That time has now lengthened - I can spend a few hours each day (broken up by rests) upright, but this in no way brings me back to "how I was before."
Occasionally I try to attend an event that may (including travel time) keep me out of the house for longer than three or four hours with no opportunity to lie down.
But for every such event I need to decide: how badly do I want to go to endure hours of of crushing pain while keeping a smile on my face and basically ruining the enjoyment of the event?
Right now I'd so much rather stay home, flat on my back, than attend an event wearing the only clothing that covers my swollen, inflamed body without hurting, and having only my cane to support my weight from time to time if the crushing sensation gets too bad.
Has any good come out of this? Perhaps I've become more attuned to others dealing with pain. Perhaps I'll be a kinder, more sympathetic person. It may build my character. But mostly I'm just hurting.
MY OSTEO TEAM: WHAT IS AMGEN'S ROLE HERE?
My Osteo Team at www.myosteoteam.com appears to reach out to people seeking basic information. This website cites Amgen (the manufacturer of Prolia) as one of its sponsors. So far I have not found much useful information here but they sent me this article:
https://www.myosteoteam.com/resources/osteoporosis-what-women-should-know.
It listed a number of risk factors for fracture but I could find nothing specifically about "delay" in receiving a Prolia injection for people already using Amgen's product, Prolia.
I have informed Amgen about my experience at their consumer phone number, 800-772-6436, in hopes that they would share it with others. I believe they should have specifically included the dangers of delay in receiving Prolia shots in their materials for consumers as well as doctors.
Since www.myosteoteam.com may have some sort of relationship with Amgen, it would seem that this website would be another good place to post this information. I hope that my experience will result in more people knowing about this hazard of Prolia.
You can visit My Osteo Team (and sign up for their communications) at: https://www.myosteoteam.com/resources/getting-started-on-myosteoteam.
Here is my story that I posted on My Osteo Team where my screen name is Viazoy:
https://www.myosteoteam.com/users/5bf60f8a65df61084009721b/story
I appreciate having this opportunity to share my experience with others whom I hope it will help. Based on my own experience I would say that 1) even a short delay in receiving a Prolia shot could be disastrous and 2) it may be hard or even impossible to get off Prolia without severe consequences! This is why I feel like a fish trapped in a gill net!
https://www.myosteoteam.com/resources/osteoporosis-what-women-should-know.
It listed a number of risk factors for fracture but I could find nothing specifically about "delay" in receiving a Prolia injection for people already using Amgen's product, Prolia.
I have informed Amgen about my experience at their consumer phone number, 800-772-6436, in hopes that they would share it with others. I believe they should have specifically included the dangers of delay in receiving Prolia shots in their materials for consumers as well as doctors.
Since www.myosteoteam.com may have some sort of relationship with Amgen, it would seem that this website would be another good place to post this information. I hope that my experience will result in more people knowing about this hazard of Prolia.
You can visit My Osteo Team (and sign up for their communications) at: https://www.myosteoteam.com/resources/getting-started-on-myosteoteam.
Here is my story that I posted on My Osteo Team where my screen name is Viazoy:
https://www.myosteoteam.com/users/5bf60f8a65df61084009721b/story
I appreciate having this opportunity to share my experience with others whom I hope it will help. Based on my own experience I would say that 1) even a short delay in receiving a Prolia shot could be disastrous and 2) it may be hard or even impossible to get off Prolia without severe consequences! This is why I feel like a fish trapped in a gill net!
THE CENTER FOR HEALTH JOURNALISM
At the Center for Health Journalism you will find news articles on issues involving Prolia.
https://www.centerforhealthjournalism.org/search/google/Prolia
Here is one of the articles listed there.
https://www.centerforhealthjournalism.org/2015/03/21/prolia-another-wonder-drug-wasnt Had I read this or some of the others listed there, I wouldn't have gone near this drug.
https://www.centerforhealthjournalism.org/search/google/Prolia
Here is one of the articles listed there.
https://www.centerforhealthjournalism.org/2015/03/21/prolia-another-wonder-drug-wasnt Had I read this or some of the others listed there, I wouldn't have gone near this drug.
~~~~~~~~~~~~~~~~~~~~~~~
HEALTH UNLOCKED
"Health Unlocked" is what I would call "Medical Social Media"
This website invites health care consumers to share their experiences. I'm not sure who vets the posts, but it may be useful to see what others are asking and experiencing. Again, anything here you are thinking of adopting for yourself should be checked with your own qualified health care provider.
Health Unlocked https://healthunlocked.com appears to originate in the UK. I cannot tell for sure, nor can I tell whether or how these posts are medically vetted. But it's an interesting site, and many posts ring true with my own unhappy experience with Prolia.
(It references being part of the National Osteoporosis Society which comes up in this Wikipedia article on the Royal Osteoporosis society:
https://en.wikipedia.org/wiki/Royal_Osteoporosis_Society#The_Duchess_of_Cornwall_Award
If this is not correct attribution I'll change it as soon as I can find the necessary information.)
It says it has an app but I can't find it. I'll keep looking!
Here's an article with information about Health Unlocked:
https://en.wikipedia.org/wiki/HealthUnlocked
I post there under the screen name: "Viazoy."
I have found interesting posts at two "communities"of Health Unlocked.
A. Bone Health https://healthunlocked.com/bonehealth
and
B. American Bone Health https://healthunlocked.com/american-bone-health
(It's not clear to me that the posts here are strictly divided according to whether they originate in the U.S. or the U.K. but both have interesting posts.)
Entering the word "Prolia" as a search item brings up a number of posts:
https://healthunlocked.com/search/posts?query=Prolia&page=1&community=all
And entering osteoporosis brings up more:
https://healthunlocked.com/search/posts?query=Osteoporosis&page=1&community=all
You can find some of my posts here under my screen name "Viazoy."
https://healthunlocked.com/bonehealth/posts/138831345/an-unnecessary-disaster-involving-prolia
While these websites have the verification issues common to social media, they still offer what may be useful accounts of what can result from Prolia that Amgen doesn't discuss much in its own presentations, and that I was never told when I was prescribed the drug.
Had I read these first, I probably would not have started on Prolia.
https://healthunlocked.com/bonehealth/posts/135922024/stopping-prolia
An interesting article published recently at the website Health Unlocked discusses the marketing of drugs for osteoporosis by scaring women into taking dangerous drugs.
Read the Health Unlocked discussion here:
https://healthunlocked.com/bonehealth/posts/139462412/scaring-women-into-taking-dangerous-drugs-something-to-think-about.?uid=a9561e0e-cc12-4d8f-a432-46940159b283&utm_campaign=bonehealth&utm_medium=email&utm_source=notification&utm_term=new-daily+digest
and more at:
https://healthunlocked.com/bonehealth/posts/139462412/scaring-women-into-taking-dangerous-drugs-something-to-think-about.?responses=139481455&utm_source=notification&utm_medium=email&utm_campaign=email_individual_response?uid=a9561e0e-cc12-4d8f-a432-46940159b283&
(These are basically from the same threads but the latter has more recent responses.)
You can see the discussed article (published in the Canadian Womens Health Network in 2005) here:
http://www.cwhn.ca/en/node/39499
I wish I had known these things years ago!
How I wish I had refused Prolia until it had been on the market for at least 5 years or preferably 10, so I could have had a fuller picture of the problems with this drug.
And would have I trusted the the DEXA results so much had I known more?
On the other hand, would I have broken bones had I waited? I'll never know.
But I may have let fear overcome reason, so here I am today!
This website invites health care consumers to share their experiences. I'm not sure who vets the posts, but it may be useful to see what others are asking and experiencing. Again, anything here you are thinking of adopting for yourself should be checked with your own qualified health care provider.
Health Unlocked https://healthunlocked.com appears to originate in the UK. I cannot tell for sure, nor can I tell whether or how these posts are medically vetted. But it's an interesting site, and many posts ring true with my own unhappy experience with Prolia.
(It references being part of the National Osteoporosis Society which comes up in this Wikipedia article on the Royal Osteoporosis society:
https://en.wikipedia.org/wiki/Royal_Osteoporosis_Society#The_Duchess_of_Cornwall_Award
If this is not correct attribution I'll change it as soon as I can find the necessary information.)
It says it has an app but I can't find it. I'll keep looking!
Here's an article with information about Health Unlocked:
https://en.wikipedia.org/wiki/HealthUnlocked
I post there under the screen name: "Viazoy."
I have found interesting posts at two "communities"of Health Unlocked.
A. Bone Health https://healthunlocked.com/bonehealth
and
B. American Bone Health https://healthunlocked.com/american-bone-health
(It's not clear to me that the posts here are strictly divided according to whether they originate in the U.S. or the U.K. but both have interesting posts.)
Entering the word "Prolia" as a search item brings up a number of posts:
https://healthunlocked.com/search/posts?query=Prolia&page=1&community=all
And entering osteoporosis brings up more:
https://healthunlocked.com/search/posts?query=Osteoporosis&page=1&community=all
You can find some of my posts here under my screen name "Viazoy."
https://healthunlocked.com/bonehealth/posts/138831345/an-unnecessary-disaster-involving-prolia
While these websites have the verification issues common to social media, they still offer what may be useful accounts of what can result from Prolia that Amgen doesn't discuss much in its own presentations, and that I was never told when I was prescribed the drug.
Had I read these first, I probably would not have started on Prolia.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Here is a feed on the effects of stopping Prolia from Health Unlocked as of September 27, 2018.https://healthunlocked.com/bonehealth/posts/135922024/stopping-prolia
An interesting article published recently at the website Health Unlocked discusses the marketing of drugs for osteoporosis by scaring women into taking dangerous drugs.
Read the Health Unlocked discussion here:
https://healthunlocked.com/bonehealth/posts/139462412/scaring-women-into-taking-dangerous-drugs-something-to-think-about.?uid=a9561e0e-cc12-4d8f-a432-46940159b283&utm_campaign=bonehealth&utm_medium=email&utm_source=notification&utm_term=new-daily+digest
and more at:
https://healthunlocked.com/bonehealth/posts/139462412/scaring-women-into-taking-dangerous-drugs-something-to-think-about.?responses=139481455&utm_source=notification&utm_medium=email&utm_campaign=email_individual_response?uid=a9561e0e-cc12-4d8f-a432-46940159b283&
(These are basically from the same threads but the latter has more recent responses.)
You can see the discussed article (published in the Canadian Womens Health Network in 2005) here:
http://www.cwhn.ca/en/node/39499
I wish I had known these things years ago!
How I wish I had refused Prolia until it had been on the market for at least 5 years or preferably 10, so I could have had a fuller picture of the problems with this drug.
And would have I trusted the the DEXA results so much had I known more?
On the other hand, would I have broken bones had I waited? I'll never know.
But I may have let fear overcome reason, so here I am today!
Sunday, January 27, 2019
A LONGER DEAR DOCTOR LETTER FROM A PATIENT
I wrote this for a medical meeting my doctor will attend this month, and am reprinting it here for your convenience. I don't expect my doctor used it but here it is!
After a year, with time, physical therapy, and a good deal of out-of pocket expense, I am slowly regaining more mobility with somewhat less pain.
Fractures were the worst but not the only problems associated with Prolia.
Too busy? Consider the results when patients learn what I have learned so painfully, and prepare someone in your practice to counsel them.
I regret being unable to meet you and give you this in person. I am still too disabled to travel. But I hope you will consider what I have written here. No one deserves to have an active life destroyed so unnecessarily or so painfully as mine has been You may also reach me via: www.JoansBackboneDisaster.com or at JoansBackboneDisaster@gmail.com
Cordially, Joan Levin, Chicago
Dear Doctor, March, 2019
You may have recently viewed a scan of vertebral compression fractures at T11, T12 and L3 associated with a delay in receiving Prolia (denosumab, Amgen). Those
bones could be mine. Before these fractures I was “81 going on 60.” Retired, I was active with family, friends, organizations and travel. Now I am “82 going on 160,” in
daily pain and limited in activity. This might have been averted had Amgen warned of the danger of even short delays in administering its osteoporosis drug Prolia.
After a year, with time, physical therapy, and a good deal of out-of pocket expense, I am slowly regaining more mobility with somewhat less pain.
But some pain, disability and other problems may be permanent and may have already, directly and indirectly, adversely affected my health.
MY BIGGEST MISTAKE: I should never have agreed to Prolia when it had not been on the market for at least five years after FDA approval, and before many problems,
including those resulting from delay (or “stopping” or "discontinuation," to use Amgen's language), had become apparent.
Prolia was marginally helpful, but other approaches might have been safer. Now, despite the problems with this drug, there seems to be no way to stop Prolia safely (without possibly moving to another drug with its own serious problems).
Fractures were the worst but not the only problems associated with Prolia.
Problems involving needed dental care, urinary tract infections, skin problems and other matters are arguably attributable to Prolia as well.
MUCH OF THIS COULD HAVE BEEN AVOIDED. Had Amgen’s patient information specified the hazards of “delay” (as opposed to a direction to “speak to your doctor before stopping Prolia,” especially as “stopping” this drug was not my intention), and had my record been flagged to have me come in for an injection even though a newly assigned doctor could not see me right away, these fractures and the resulting pain and disability might have been avoided.
WHAT CAN YOU DO? With considerable personal effort and expense I am slowly improving, but recovery may never be complete. So to help others avoid what I have suffered, I offer these suggestions to spare your patients this nightmare:
1. Do not prescribe Prolia. If there are safer ways to prevent fractures please consider and recommend them.
2. Report Adverse Drug Reactions arguably associated with Prolia to the FDA.
Report to Amgen as well. (800) 772-6436. You do not need to prove causation to report suspected adverse drug reactions.
3. When patients ask about Prolia (perhaps having seen Amgen’s TV ads), counsel them on the dark side of Prolia, and stress the dangers of delay and other issues with Prolia.
Too busy? Consider the results when patients learn what I have learned so painfully, and prepare someone in your practice to counsel them.
4. For patients now on Prolia, warn about the danger of delay, as they may not understand this from the tiny Amgen tab with their next shot date. To assure this, flag patient records so staff will make sure patients receive Prolia shots on time.
5. Warn patients, as graphically as possible, that what might have been a pleasant and productive part of their lives could be abruptly, painfully, expensively and permanently terminated if they do not get their Prolia shot on time.
6. Feel free to share my blog. www.JoansBackboneDisaster.com.
Consider adopting examples of warnings at
Patients may also find resources in this blog, including books and websites with information about osteoporosis and treatments in general.
7. Identify safe protocols to exit Prolia. Research is needed here! I would be grateful to learn whatever you know about this at JoansBackboneDisaster@gmail.com.
8. Identify rehabilitative resources for patients harmed by Prolia. If your institution cannot provide these, identify resources in your community (Medicare reimbursed where applicable) to help patients harmed by Prolia.
IF YOU WORK FOR AMGEN, ask yourself: Is Prolia a blockbuster or a bonebuster?
Consider advocating for one or more of the following:
1. Withdrawing Prolia from the market or marketing it only as a last resort for
osteoporosis not treatable by safer means.
2. Withdrawing television and other Direct to Consumer advertising for Prolia.
3. Developing safe exit strategies for those already trapped in a Prolia regimen.
4. Placing Black Box warnings about the danger of delay in all labeling, and highlighting warnings about “delay” (using this word) in patient information.
I regret being unable to meet you and give you this in person. I am still too disabled to travel. But I hope you will consider what I have written here. No one deserves to have an active life destroyed so unnecessarily or so painfully as mine has been You may also reach me via: www.JoansBackboneDisaster.com or at JoansBackboneDisaster@gmail.com
Thursday, January 24, 2019
THE NEW YORK TIMES WEIGHS IN AGAINST VERTEBROPLASTY
On January 24, 2019 the New York Times published this article on vertebroplasty (surgery involving injection of cement into vertebrae) as treatment for painful vertebral fractures such as I am dealing with now.
https://www.nytimes.com/2019/01/24/health/spinal-fracture-treatment.html
Written by NYT Health Writer Gina Kolata, this article was based on an article published that day in the Journal of Bone and Mineral Research:
https://onlinelibrary.wiley.com/doi/full/10.1002/jbmr.3653
I'll add more text about this later but I wanted to get these websites out now.
Once again, anything in these or any other information on these pages you decide to adopt for yourself should be checked out with your own qualified health care provider.
https://www.nytimes.com/2019/01/24/health/spinal-fracture-treatment.html
Written by NYT Health Writer Gina Kolata, this article was based on an article published that day in the Journal of Bone and Mineral Research:
https://onlinelibrary.wiley.com/doi/full/10.1002/jbmr.3653
I'll add more text about this later but I wanted to get these websites out now.
Once again, anything in these or any other information on these pages you decide to adopt for yourself should be checked out with your own qualified health care provider.