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INTERESTING STUFF – 15 April 2017

Modern-Day Phossy Jaw and Osteoporosis Drugs

Today's post is a good deal lengthier than usual but I believe it's worth it. I hope you think so.

Like many people about my age (76 now), it did not occur to me when I was young to question my physician. If he or she said this pill or that treatment was good for what ailed me, I believed, I followed the instructions.

Life goes on and things change. For many years now, when I am unfamiliar with drugs, treatments and therapies that are recommended, I do the research first. You probably do that too.

Here is a personal story about how important this can be.

THE HISTORY
In the 19th and early 20th century, phosphorus necrosis of the jaw was a deadly condition particularly affecting people who worked in the matchstick industry (often children and young women) as a result of their exposure to yellow (now called white) phosphorus.

It was a horrible disease, eating away teeth and jawbone before, if left untreated, moving on to brain damage, organ failure and death. Not that the treatment was all that helpful. It largely involved removal of the jawbone which made eating difficult and patients then sometimes died of malnutrition.

The popular name for this disease, in England, was phossy jaw and it generally disappeared when, in the early 20th century, phosphorus matches were outlawed in most countries of the world.

Then, a century later, this:

But how can someone younger than me
have osteoporosis, and sit
googling up a substance that might
help it, or give her phossy jaw?

That is from a contemporary poem (2013) titled Match Girl by British poet, Fleur Adcock, indicating, with the reference to osteoporosis, that phossy jaw has returned to plague some people in the 21st century who use a certain prescription drug.

The only reason I know this is that I have lately been “googling up a substance that...might give ME phossy jaw.”

THE DIAGNOSIS AND PRESCRIPTION
A couple of months ago, after a bone scan, my physician noted that the results indicate that I have osteopenia (early osteoporosis) and would benefit from taking a certain bisphosphonate drug.

If you don't know that word, you undoubtedly know some of the brand names of bisphosphonates that are ubiquitously advertised in magazines and on television: Fosamax, Boniva, Actonel and less frequently, Aclasta, Aredia, Binosto, Didronel, Reclast and Zometa among a few others most of which have generic counterparts. They are common treatments for osteoporosis.

Brand name bisphosphonates

The doctor continued. Among a long list of lesser side effects, he said, between one and six percent of patients using these drugs suffer osteonecrosis of the jaw - that is, phossy jaw which is also known in the medical community shorthand as ONJ.

Even though I had not yet learned the nickname “phossy jaw,” the more medically correct designation, osteonecrosis (bone death), was frightening enough when I heard it that even without yet knowing details, I declined the prescription that day, telling the doctor I would do some homework and get back to him.

For something as ghastly as phossy jaw, one to six percent possibility does not strike me as insignificant. And there is the pesky chance, too, of spontaneous femur breakage that can result from bisphosphonate usage that the doctor had not mentioned.

THE RESEARCH
Once again, thank you Tim Berners-Lee for inventing the internet. I cannot imagine how I could have tracked down all the information I wanted without it and it took only a couple of hours to amass enough for a good overview of osteoporosis treatment.

Among the statistics for bisphosphonates is the warning that “invasive dental work” apparently increases the incidence of phossy jaw.

Invasive dental work. You might recall, as I mentioned in February, that for more than two years I have undergone tooth extractions, procedures to grow new bone in my jaw, subsequent dental implants and an over-denture.

There is no question all that qualifies as “invasive” so I emailed my dentist who is also a bone and implant specialist. He wrote back:

”I would like to chat about this with you - very complicated answer...Bottom line - my answer is no way - you grew great bone during our treatments.”

Later, we spoke on the telephone for more than an hour. I got a terrific education in bone growth and phossy jaw, and he reiterated that my new bone growth was "exceptionally successful."

Osteoporosis

He also believes that physicians overprescribe bisphosphonates to women 70 and older (far fewer men are at risk for osteoporosis) and that everyone should be asked if they have had or are expecting to have invasive dental work before deciding on the drug.

Back on the internet, I tracked down some statistics on bisphosphonate (BP) prescriptions (it isn't easy to find). As of 2014, there were 46.2 million women in the United States age 65 and older. According to the U.S. National Institutes of Health,

”...an estimated 30 million BPs prescriptions are written every year in the United States alone, and more than 190 million prescriptions are written annually worldwide.

There is no information about how those prescriptions are counted but even if they are off by a few million, somewhere in the vicinity of 65 percent of the affected age group with scripts for bisphosphonates seems wildly excessive to me.

Statistics on the incidence of bisphosphonate-related phossy jaw are even harder to come by. The apparent standard that is widely quoted - 1 in 100,000 for oral bisphosphonate and 1 in 10,000 for intravenous bisphosphonate - is sketchy.

There have been no randomized, controlled trials of long-term use of bisphosphonates (commonly prescribed for a five-year span) so claims for their safety in regard to phossy jaw are indeterminate, whatever drug companies claim.

In a paper about bisphosphonates and the risk of osteonecrosis of the jaw, the British Journal of Medical Practitioners published what is the smartest list of recommendations for all medical and dental practitioners I have seen in all my research. Before beginning a bisphosphonate regimen,

”All patients should undergo a routine dental exam to rule out any dental source of infection.

“All medical practitioners also should perform a baseline oral exam.

“Invasive dental or/and oral surgical procedures should be completed before initiating therapy.

“Practice preventive dentistry, involving procedures such as oral prophylaxis, dental restorations, and endodontic therapy, and check dentures for irritational foci.

“Schedule routine follow-up every 3 months to check for any signs of developing ONJ (osteonecrosis of the jaw).

“The risks associated with oral surgical procedures such as dental implants, extractions, and extensive periodontal surgeries must be discussed with the patient and weighted against the benefits.”

The only recommendation I question is the one about completing invasive dental work before initiating therapy because the researchers tell us in the same breath to schedule dental followups every three months after use of bisphosphonate treatment begins, strongly implying that they believe there can be continued risk of phossy jaw after dental work is finished.

There are breathtakingly long lists of other side effects ranging from sniffles to phossy jaw and broken thighs for all the bisphosphonate drugs. You can find good side effect information for brand name drugs at drugs.com or rxlist.com.

Some pharmaceutical companies that produce brand name bisphosphonates try to play down the possibility of phossy jaw and spontaneous thigh fracture by saying that occurrences are “rare.” But there are no definitive statistics and "rare" depends entirely on a patient's characterization of the word, not the drug company's.

THE DECISION
Bisphosphonates slow bone loss, strengthen bones to a degree that helps prevent further weakening and people who take a bisphosphonate are less likely to break a bone (well, if you don't count those thigh breaks that are associated with the drug).

I understand all that. I also understand that when old people break a bone, they often do not recover well or at all in too many cases, which are good reasons to think hard about this class of drugs for osteopenia and osteoporosis. (They are also used to treat certain cancers and Paget's disease.)

Osteoporosissymptoms

Nevertheless, even though I have been diagnosed with osteopenia, I have declined the drug and it was the recent dental work along with my dentist's strong caution that tipped the scales for me.

According to an article by respected science and medicine reporter, Gina Kolata, in The New York Times last year, I am not alone:

”Reports of the drugs’ causing jawbones to rot and thighbones to snap in two,” she wrote, “have shaken many osteoporosis patients so much that they say they would rather take their chances with the disease.

“Use of the most commonly prescribed osteoporosis drugs fell by 50 percent from 2008 to 2012, according to a recent paper, and doctors say the trend is continuing...

“Lawsuits over the rare side effects resulted in large jury awards and drew widespread attention.”

The decision about use of any risky drug is entirely personal, dependent on diagnosis, other medical factors, a thorough discussion with one's physician and on personal inclination. I can easily imagine, if my bone density were worse than it is now, making the opposite decision.

Many people, undoubtedly millions of them, have been saved from the worst effects of osteoporosis due to bisphosphonate drugs and god knows I am not lobbying against their use. However, what strikes me about these particular drugs is that it is mostly old people who need them and old people usually have a lot more invasive dental work than younger people.

Yet, I had to find out about the possible connection between bisphosphonates and phossy jaw only because that word "necrosis" my doctor uttered, went off in my head like a fire alarm. Bone death is worth paying close attention to.

So. All potential adverse effects should always be clearly made to patients, and we patients should always be ready with questions when a recommendation is something with which we are unfamiliar.

Although my doctor mentioned osteonecrosis, he was dismissive of the one to six percent chance of it occurring - “only,” he said of the gamble. He may believe those numbers are negligible but that is a personal calculation, different for each of us.

I'm not blaming him for not mentioning the dental work connection. Doctors cannot possibly keep up with every contraindication for every drug. But I'm sure happy that word “necrosis” leapt out at me when he was speaking or I might not have “googled a substance that might lead to [modern-day] phossy jaw” and that important discussion with my dentist who has more experience with the results of the drug than most internists would.

[NOTE: I have left off photographs of phossy jaw (osteonecrosis of the jaw, ONJ) in this report because they are really gruesome. If you are interested, here is a link.]

Comments

Good for you Ronni for doing your homework! Some years back I had a similar episode although at the time I decided to swallow the drug. After a year, there was no improvement in my "numbers" so the doctor wanted to add a second drug to "boost" the first one. At that point I sat at my computer and visited the FDA website... where the drug approval processes are posted. (Before the internet I would have had to find a medical library that would let me in.. not likely) Statistics were never my strongest subject and these applications are full of them. I had to assume they were correct. The bottom line was that the second drug in trials had only a tiny effect (smaller than the chance of osteonecrosis) and the first drug was marginally better than a sugar pill! Those small benefits are sufficient for FDA approval. I declined the second (the doctor tried to scare me into taking it), tossed the first and changed doctors.

Since then I have declined to have my bone density measured. I do not want to take those drugs... so there is no point.

Thanks for this Ronni. A timely discussion indeed.

I stopped taking this stuff a few years ago after experiencing horrendous side effects of every description. I had mild osteopenia, and my doctor indicated this was a way to slow progression.

My numbers stayed relatively stable until last year when suddenly I made a huge leap into full-blown osteoporosis of my hip. My spine numbers are still ok.

Now apparently my choices are between (non-biphosphonate) yet also potentially harmful drugs such as Evista, Prolia and other injectables that also have scary side effects and a huge price tag.

So here I am, doing nothing and knowing that I have moved into the osteoporosis zone, if I believe the numbers. No amount of weight bearing exercise is going to reverse this. But I am afraid of these drugs.

It seems to me that we are left to our own devices because of a pervasive attitude that old people are going to die anyway so let's just give them the drugs, side effects or not.

Not that I am that old - at 68 I certainly don't need to be worrying about breaking a hip!

What to do, what to do?

I took those drugs for two months before my then doctor casually told me about the possible jaw problems. Even though I meticulously followed the directions, abundance of water, sitting or standing for a least half an hours after swallowing, the stuff irritated my esophagus to the point the damage was referred to as "a kind of burn." It took a few months to heal. They suggested intravenous, I said "no thanks." I too changed doctors.

Outstanding information for everyone, Ronni.

I refused to take any meds when my bone scan showed thinning (while in my 50s), and chose instead to take up exercising and learning about nutrition. So far, so good, yet this article reminds me to thoroughly investigate all suggested drugs. Then figure out what choice works best for my life.

I remember both my mom and mom-in-law regarding their docs to be all-knowing and would never think there was any need or value in questioning their prescriptions. I doubt they could have named the side-effects associated with any of the 2+ drugs they consumed.

As an aside, I'm struck by how they wouldn't want that trust in their docs to be shaken, but would strongly hold onto an untested belief( likely encouraged by the medical network, including near airy-fairy ads made for the drugs mentioned in your article) - rather like the unexamined 'beliefs' in government/political beings.

In the end, it sounds like people are thinking more for themselves these days and all's good with that kick-butt attitude.

Ronni,
You are so right on with your assessment. I took one of the biphosphonates for a week back in the late 1990's--my stomach could not tolerate it. I was dxd with osteoporosis at 60, then in 2008, was told I have osteopenia--I used an estrogen patch for most of the years in between as well as loaded up on Vit. D and Calcium.

I am dealing with an incurable leukemia for which I was diagnosed in 2001 and to-date have had no treatment. Was recently told I need to be treated. Was told there is one that "we treat old people with." This is from a woman Dr. who so far has shown me she has no empathy, no concern for my fears, no assistance from any RN Practitioner who has been trained to communicate on a level of human concern.

There was no information about how I would be followed, "It is simple, just take the pill at home." No information about adverse effects. No information about the cost of the medication. AND I know it is one that has to be taken for the duration--which could be quite short.

I will not be going back to this Dr. Plan to get a second opinion and look into palliative care option——but all this comes with a lot of deep down emotions of fear, and weariness at trying to get all the ends together.

This is a medicine touted as NOT a chemotherapy, but a BTK inhibiter, which is said to inhibit BTK, which may be what causes the cancerous B Cells to not die as all healthy blood cells are supposed to on a regular basis.

It is said that this medicine and others being developed and adopted by the FDA are milder in toxicity than chemotherapy drugs, which have been found to be have too much adverse effect on people over 70....

Here are several of the medication adverse effect statements by Pharmacyclics, LLC in conjunction with Janssen Biotechs, Inc.——

Bleeding problems are common during treatment; can be serious; may lead to death.

Infections can happen during treatment and can be serious; may lead to death.

Decreased Blood counts are common, but can also be severe.

New or worsening high blood pressure has happened in pts. being treated.

Turmor Lysis syndrome (TLS) can happen, cause kidney failure, seizures and sometimes death.

An important (I think) fact I discovered is that CMS (medicare) has an Oncology Care Model which some Oncology Drs. groups have signed onto (the one I have been going to has done so, given a slip of paper to each pt. that says so, but no information beyond that.)

I found this online
Oncology Care Model (OCM), which differs from COME HOME in several important ways. It does not abolish FFS but provides an additional payment in 6-month increments for each patient on active cancer treatment. It also allows practices to participate in savings if they can decrease the overall cost of care, to include all chemotherapy and supportive care drugs, and fulfill certain quality metrics. A critical discussion of the proposed model, which is scheduled to start in 2016, will be provided at the 2016 American Society of Clinical Oncology (ASCO) Annual Meeting with practicing oncologists and a Centers for Medicare & Medicaid Services (CMS) representative.

Under the OCM, physicians are paid in two ways. The first is a monthly captitation payment, called a Monthly Enhanced Oncology Services payment. Participating practices will receive $160 per Medicare fee-for-service beneficiary per month. This is intended to cover the costs of managing and coordinating care. The second payment is a performance-based incentive, based on the OCM episodes of care.

I can't find a lot about quality of care with the group I have been going to--it is sorely lacking heart in the Physcians clinical area --the iv treatment area is supposed to be where they have sent all the Nurse Practitioners.

Ohmigod, Ronni ... you are so good to and for us. Thank you for all your hard work related in such a user-friendly way. Yes, it's scary ... but far, far better to know and make an information-based decision.
Thank you.

A terrific article, Ronni.

The research you did , Ronni, is an eye opener for me. I guess you're never too old to learn something new.

I had a full body bone scan during my 12 years of taking part in the "Woman's Health Initiative Study" and was told I had Osteoporosis. My doctor put me on Actonel and I took it faithfully for about 15 years.

Ronni, I know you and many of your long term followers remember when I fell and broke my hip. To now discover that Actonel may have been the culprit is surprising. I doubt it, but that possibility is something to think about.

My current doctor took me off of Actonel after I had another bone scan (not full body) and the result was my Osteoporosis was now Osteopenia.

Another fall resulted in a compress fracture of a vertebrae. My old bones are obviously weakened in spite of taking Actonel. It's my belief that nothing is going to keep your bones strong as you age because they wear out just like the rest of your body.

In addition to my broken bones I am now an inch shorter (possibly more) than I used to be. My posture is probably stooped. So did all those years of taking Actonel help or harm me?

On Monday I am going to the dentist to continue extensive dental work started before my latest fall in December. I will certainly discuss Phossy Jaw with him. It sounds like a horrible disease and would not be my choice of the "way to go."

Thank you, Ronni, for this post. I will save it and show it to everyone who has had
these drugs suggested to them. I took reclast & fosomax for about 3-4 years (infusion) at the suggestion of my wonderful, caring GYN doc who had twice saved my life with cancer surgeries. When I learned by reading on the internet of the danger of necrosis of the jaw, I quit immediately. She never once mentioned the dangers to me. Fortunately I have had no ill effects, neither have I ever broken a bone, in spite of being 84 and falling hard several times!

I appreciate the heads-up and will certainly keep this in mind when the subject comes up. But I'll have to weigh that 1%-6% against the remaining 94%-99% and the experience of relatives -- broken wrists and ankles, broken hip, etc. To date, at age 74, my scans show normal bone density and my teeth/jaw are solid, but it's anyone's guess how much longer that will be the case.

My choice, encouraged by my uro/gynecologist, has been to continue sublingual Tri-est drops, a compounded estrogen. I understand the concerns about estrogen, too, but since there is no family history of cancer that I know of, the doc feels that this is the best option for my bones. Obviously this would not be the best option for everyone.

I never liked Nancy Reagan, but she did have one good point--just say no to drugs. That's me.

I take almost no drugs and when prescribed, I make the doctor tell me everything she knows about it. I have an excellent dr who has worked in training drs how to better manage drug use in patients. She calls me a drug-virgin, and always prescribes the smallest amount possible for the least amount of time.

I had a friend, who upon dying, had 15 prescriptions sitting on her kitchen table. One of them being a drug for osteoperosis. Her jaw had given way by this time. Her health abysmal. I blamed it all on her bad diet and the overabundance of drugs.

I scooped up the prescriptions and took them back to the pharmacy that had filled each one; they looked at me in horror when I dumped them on their counter and said, get rid of these.

Whoa! Thank you so much for this information. I knew about the thigh break problem, but not this other horrible side effect. Like you, I do my research and learn what I can about any new prescription. This is not always an easy or fruitful task, but we must try, if only to help protect ourselves, especially now with this wave of government regulation reductions. Love the blog.

For a few years I took fosamax for my alleged osteoporosis. In time I noticed gerd issues and abdominal discomfort. My doctor was a fine fellow who loved whatever medication came along. After doing a bit of research - such as was available maybe 20 years ago, I decided to quit taking fosamax and hope that my (at that time) running 6 days a week would keep my bones strong. I had already stopped taking hormones a few years earlier after I read an article in the Harvard Medical News letter about the downside of hormone therapy.
Here I am more than 20 years later -not taking any drugs for my bones, having one broken in the meanwhile from a very hard fall on one elbow while running. The surgeon who put my elbow back together with a plate and screws made no mention of my having fragile bones. a family friend who had both hips replaced was put on fosamax and got a femur fracture that kept him in bed and pain for 6 months.
I work hard on maintaining good posture - to prevent the slumping shoulders, the rounded neck, to keep myself straight with even shoulders - doing daily exercises that keep me strong and in good alignment. I work on balance. When my primary care physician asks me to have a bone scan I tell her that I will do so IF I break a bone from osteoporosis and/or drugs that treat thinning bones are developed that do not cause brittle bones. In the meanwhile I prefer ignorance to pressure to take a drug because of bone density results that are based on fairly poor science.
I am not spending money on drugs that "may" prevent something. I am all for doing what is needed to cure a known disease - but not to prevent something that I may or may not get. The hot flashes finally went away and while I no longer run 6 days a week - just 2-3 days a week plus weight lifting and rowing on a ERG, I will not live forever but I certainly do not want to have to deal with health problems caused by medications that are alleged to prevent something that I do not yet have.

Among the other many reasons I love this blog: I am always learning something I didn't know. Thanks for this potentially life-saving post.

Thanks so much for this--and to the rest of you for all of the above. I have done as much as I can to avoid being a patient, and I had a wonderful doctor, who, alas, just retired. I had a bone density test some time ago and was diagnosed with osteopenia--not long after I had taken some gnarly tumbles and not broken anything. My own doctor said ostopenia means your bones are not as dense as they were when you were thirty. I have not had any treatment--I'm in the anti-drug contingent--and I exercise. So far so good. I'm about to turn 77. I know I'm lucky in many ways, e.g. heredity. But I also fear messing around with drugs of any kind, though, yes, I take an antidepressant, being a many years long depressive.

I made a "No" decision on these drugs even before finding out that I do, indeed, have osteoporosis--scoliosis and scar tissue from previous back surgeries, too. I got this lovely news about 18 months ago when I also found out that I have NO rotator cuff remaining in my right shoulder. I'm not happy about having these conditions since they cause pain and some limitations on what I can do, but the side effects of the drugs still scare me more. My doc wanted to put me on one of them about 8 years ago (I was 72) as a "precaution" since I'm small-boned, white, female and weigh about 95 lbs. I declined. Fortunately, I haven't broken any bones yet that I know of. I have lost height and work hard to avoid slumped posture.

I can't take NSAIDs since I can literally feel them eating a hole in my stomach lining, and when I read what was known about the bone-building drugs 8 years ago, gastrointestinal distress seemed to be a fairly common side effect. Subsequently, the idea of losing my jaw was a consideration, as was the possibility of a shattered femur.

I walk every day and stay as active as I can, but I agree with Darlene that bodies wear out; mine will probably wear out before I reach her venerable age. Of course, since my body didn't anticipate still being around at 80, it didn't receive good care or even much attention in its younger years!

Thanks to the Internet and Ronni for giving us information we need and might not get otherwise.

My deceased husband's doctor prescribed Fosomax for him(J) because he had metastatic prostate cancer in his leg bone. In the following few years, J had a crack in one of his molars. He had the head dentist at the university dental clinic both knew of the dangers of the drug and so did minimal treatment of the crack. J was only 52 years old when diagnosed and 62 when he died. BTW, I'm glad screening for prostate cancer is no longer restricted by age.

So, is osteopenia a real thing or a drug-company made-up diagnosis? I'm inclined to believe the latter. I don't do bone scans, I'll take my chances on breaking bones without drugs to "prevent" it. I used to take ibuprofen for pain until I read that I shouldn't give my old dog aspirin for arthritis because long term it destroys bone. Huh (light goes on). Better to avoid the "side effects" I think.

And I agree, a big thank you to Tim Berners-Lee, who didn't really invent the internet but he did make it accessible to us non-techie/non-military types.

Thank you for another truly informative post, Ronni.
This is another reason why we each must take responsibility for our own health.

The Internet is a life-saver, literally as well as figuratively, when it comes to research. There are several good medical sites available to us and I use them extravagantly.

Several times I have refused meds that simply would be dangerous rather than helpful.

As far as our old bones are concerned? Well, we

    are
old, aren't we?

I do have extensive dental implants and osteopenia, and take care (as best I can) to eat nutritiously and exercise to the best of my ability. And just be careful.

It looks as if most of the commenters above do the same.

As a woman with severe osteoporosis, I did much of the same research that you did for your blog, Ronni. I now take a Reclast infusion once a year even though I have serious dental work to be done in the future.......dental work is a fact of life for many elders like us, whose teeth might not have received the care in our youth that we gave our kids.
I got my last Reclast infusion 2 weeks ago. After a lot of talk with my former doctor, my new doctor, my local dentist and even the dentist I go to in Costa Rica.
After 4 bone breaks in a period of 6 years I decided to continue the Reclast and now I'm delaying my dental work (and crossing my fingers that the needed root canal and the tooth that needs to be removed can wait until 2018.
As my balance is poor, fear of breaking bones is a much bigger fear for me than the fear of phossy bone issues.
I never took estrogen as I had an easy menopause. I am always in the lookout for a better blood pressure drug, having done or tried all the ' natural' BP drugs to no avail. I am not the kind of person who is always looking for a drug to take..the 3hypertension drugs and 1thyroud drug I take, along with vitamins and other OTC meds I take are enough, but damn I hate broken bones.
I hope that I'm not a phossy bone subject but I think osteoporosis is serious enough to take medication for help in rebuilding my bones. And I use the once a year infusion rather than monthly or daily meds. We all have to decide on our own what we're willing to take.
As for osteopenia -I read an article by the doctor who invented the word, several years ago. He needed a word for pre-osteoporosis and the word has now become a commonly used one. Is it a real condition? Not according to my osteoporosis doctor, who is also a specialist in arthritis. It's like saying a woman in her child bearing years is pre-pregnant. We either do or don't have osteoporosis. We can't have pre-osteoporosis because once our bones show larger holes in the mesh that they are made from we're then in osteoporosis itself
It's something many of us need to put serious thought into. I'll let you know next year when I have my dental work if I get phossy bone but I've had a raft of dental work already without an issue with no problem yet.
Elle

You are fortunate to have the *luxury* of making the decision to reject medication. I have severe, premature osteoporosis and cannot make the same choice.

When I progressed from osteopenia to osteoporosis my doctor wanted to put me on some prescription. She called me in to discuss it - including the side effects - since she knew I had a habit of not taking drugs. After our meeting we agreed that I would join a county-run exercise class for seniors with osteoporosis, be sure to take my vitamins/calcium/vitamin D, keep walking, do my Wii, and use some caution in my day-to-day activities (like not climbing to reach top shelves in the kitchen).

So far, so good after two years. To be continued...

Thanks for this post and the discussion, Ronnie.

Bone density is not a good predictor of breaks, because the issue with breaks is flexibility of the bone matrix, not the amount of minerals in that matrix. Dense brittle bones break much more easily than thin flexible bones. Bone matrix flexibility requires a varied diet that supplies many factors besides calcium.

We are well advised to keep as much muscle strength as we are able, and to continually work to minimize loss of balance and flexibility, and to eat our greens. After that, it is up to how we were nourished and our habits earlier in our lives, our genetics, and some amount of luck. Some of us win the bone lottery, others the heart disease or cancer lottery, but few of us win every health lottery.

When I had a bone scan in my late 50s (which shouldn't have happened, as I have no extreme risk factors and there is no demonstrated benefit for people without such risk factors to getting scanned prior to age 65) the nurse gave me confusing messages. She went over the calcium brochure with me, so I asked if more calcium would rebuild bone. She said "nothing can do that." So I asked if the recommendation would stop or slow bone loss. Same response! So why the recommendations, I queried. "Why, calcium is important for your nerves and heart," she said.

Now despite the weirdness of that, a friend with an MS in community health has clients who show improved bone density within a few years of following her dietary and lifestyle recommendations. A relative used a smoothie she concocted from reading about foods that contribute to bone health and within a few years her neck reading went from 89% (OF WHAT?) to 100%. She also had a reversal of macular degeneration which she was told was impossible. Maybe she's a miracle. Or maybe the tests are not as accurate as we think.

I am left to wonder how much medical world really knows bone health, how accurate bone scans are, and whether they might just be a current picture of bones in process rather than an absolute indication of bone loss. I don't know, but given the uncertainty and the apparent medical desire to push drugs, my genetic history, and my health habits, I've decided to decline future scans.

Everyone needs to assess their own risks, but they certainly need all the information to do that!

I was prescribed Actonel for about 5 years until a change to an endocrinologist made a diagnosis of a regression to osteopenia and a "medication vacation" however, they then doubled the calcium which has lead to a retention of calcium and complications with theparathiroid and chat about removal.....look for that problem when they boost the calcium.....it also makes you logo and aimless with very little energy and no one even considered that when I complained. I'm almost 84 and lead a very vigorous life and when I simply quit calcium pills I was back to feeling much perkier.....Pat Read

Thank you so much, Ronni. It's even more important as we age---wisely, we hope---to know that medical doctors are not sages. Overloaded by too many patients, they all too often get their information from pharmaceutical representatives. We are better equipped to know our own bodies and with only one patient to worry about, we have more time to do the necessary research.

When I was about 60 I was prescribed Fosamax, and later the generic, Alendronate, for osteopenia which I took faithfully for about 10 years then my doctor said I had to take a "medication vacation", and I was off the medication for about 2 years.

About 6 years ago I had to get a dental implant. The dental surgeon told me to stop the Alendronate for 3 months before he could do the baseline metal work for the implant. All went well but I had to stay off the Alendronate for 3 more months after the implant was completed. This due to the risk of necrosis from the medication. I have taken calcium supplements since I was 50 years old, and I love spinach, and broccoli and eat very healthy, being a vegan for the past 6 years.

I was prescribed the Alendronate medication again which I have been taking for almost 2 years. My bone density scans always varied with more bone loss in my spine one year, then, 2 years later as allowed by Medical, in my hips. My doctor told me I had less risk of breaking a bone than of being being murdered - which I thought a difficult, and grisly, comparison.

I am off the calcium since the report of it causing heart damage on the news several months ago. One never knows what to believe. I just started with a new doctor who quit before I could see her and her cases were given to a female nurse practitioner. She will look at my lab work to assess my calcium needs.

My mother was bent over with Dowager's hump for the last 8 years of her life, never had a broken bone, died of a massive stroke. I do try to have good posture, am now in full osteoporosis but I do walk frequently, do yoga, and always glad to lift and carry heavy grocery, household items and do yard work. But then, I have always done these things my entire life.

Maybe I won't renew my Alendronate when I complete the next 2 1/2 months worth.

Good to have reminders about the dangers of medications and always appreciate all the comments, thanks, Ronni !

That stuff turns your bones to chalk. Fosamax was prescribed for me after I broke a wrist and I took it for a month or so but quit after reading horror stories online from longtime users. Yes, I checked the medical sources too.

Diagnose of osteoporosis is based on charts for the young and middle-aged. Bones change over time. Old bones are bound to be different, not necessarily worse or weaker.

Some doctors are way too cavalier about diagnosis. They sometimes prescribe based only on the recommendation of a drug salesman.

From what I have researched, our bones completely renew themselves about every 10 years. When you take those meds, while it is true it prevents calcium from leaching out of your bones; it is also true that it prevents new calcium from being absorbed. So, your bones cannot renew themselves and they eventually get brittle and are more likely to break. I have osteopenia and osteoporosis in a small area of my hip. I lose between 7 and 10% every 2 years or so at least for the last 6 yrs. I refuse to take these meds. I am already eating a lot dairy, including cheese everyday, and taking 1200 mg of Calcium and over 3000 of D3. Younger women get this as well btw if they take cortico-steroids or other meds that leach Calcium out of good bones. Weight bearing exercise and diet is supposed to help... I was told by my specialist to see a Calcium Endocrinologist.

Great post! I had a hysterectomy at 46 and was curious to have a bone density test, since I didn't want to take estrogen with cancer in my family. The results were I had the bones of 70 year old!
Only Didrenol was available at the time, so on it I went plus estrogen. When fosamax came along, started that and was on it for about 10 years with no side effects.

Then I had to have a tooth pulled and no dentist in Tenn would accept the risk of jaw bone death and law suits. I found a dentist who specialized in teeth pulling in nearby NC, who not only pulled it, but claimed this was all overblown and it was only people taking cancer drugs that were effected.
Well I had the tooth pulled with no problem, but then I stopped the fosomax and I had stopped the estrogen after about three years. More time went by and I had another tooth pulled with still no problems.

I thought I would never start the pills again, but at 69 was told I had osteoporosis in my hip, so I started actonel for about a year now.

After reading this, I believe I will stop. Especially for the leg bone breakage problem.

I have also read that calcium can increase plaque in the arteries and can cause heart problems, so i stopped that, but maybe I should start it back up. I only walk for exercise, but work in my yard and I'm active.

Seems the doctors aren't all up on the latest info and pass over any real discussion and time with us, because we are old.

I'd like to see a similar post about calcium and if it really does any good. The only thing I'm sure does, is excercise.

I was diagnosed with osteopenia after menopause at age 51. My mother had catastrophic osteoporosis, had taken fosomax, and by the time she died at age 88, broke ribs every time she coughed. (Sh also had suffered several other broken bones in latter life, including her back after falling out of bed).
I had the fear of God with the diagnosis. I thought I was doomed to a slow decline like my mom. So I did my research...I changed my diet and did the prescribed weight bearing exercises religiously. Five years later the osteopenia had disapppeared... Fifteen years after my first diagnosis I've shown no more thinning of the bone, in fact. I grew back bone. And I've never used any biphosphonates.

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