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.
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.
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.
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."
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.
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.)
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.]