Editorial Note: This post is from Sara Bostock, who was one of the originators of the SSRI Stories concept and a key player in putting pressure on FDA to put in place Suicide Warnings on Antidepressants. So she is far from the average in her determination – although to look at her she looks just like the rest of us. Tough though she is, this post brings out just how difficult it can be to approach some doctors with either actual adverse events or your concerns about medicines. It can be scary because they become angry – like Maleficent in the Sleeping Beauty.
RxISK is all about patients working with doctors, nurses or pharmacists in teams to pinpoint when a drug is causing a problem. It is also about the drama that plays out when we attempt to raise things with our doctor. This can be a wonderful moment when teamwork gets established – or a moment of great peril.
As Swimming with Great Whites put it, this is the moment when a Great White jumps into your Doctors Infinity Pool – and she proves she is part of the problem or part of the solution
The hope is you will meet a doctor or non-medical prescriber you can work with and that between us we can Quality Mark such doctors, nurses of pharmacists with a Good Prescriber sign building up a network that will force other prescribers to get with the action – or go out of business.
I’m a 67-year old woman who is aware that I am at above average risk for accelerating decline in bone density according to current guidelines. I had a 95 year old aunt, my mother’s sister, who passed away recently, whose bones you could feel almost crumbling beneath your touch if you helped lift her from a chair. She’d lost several inches of her young adult height by the time she died and her spine was severely bent, presumably from osteoporotic compression. She was very fair and frail, the stereotypical profile for an “osteoporosis” victim.
Yet she never suffered a known fracture in her adult life despite falling at least once. Her condition was surely aggravated by a failure to do much of any exercise her entire life and a rather poor diet that included overcooked and over-salted vegetables and a sweet tooth.
I, on the other hand, have been vigilant for years knowing that I am at risk. I’m very active for my age, engaging in a number of different exercises that are supposed to help strengthen bones, including walking, jogging, yoga and tennis. I also eat a healthy diet.
Even so, my first bone density scan, several years ago, reported that I “have” osteopenia of the spine and hip. I received my first recommendation to take a biphosphonate. I politely declined declaring a preference for “lifestyle” methods. My doctor at the time was respectful of my skepticism regarding pharmaceuticals and even stopped insisting I be screened.
In the last year, however, I moved to a new area and also had to endure radiation (another risk factor for bones) to my pelvic region for cancer (now resolved).
My new primary care physician strongly encouraged me to be screened again and I reluctantly agreed knowing that it might set me up for a confrontation over recommended treatment. Sure enough I had just tipped into the osteoporosis range for my spine; my hip was still osteopenic. She called to discuss my results on the phone. When I said I would not take a biphosphonate, she told me to make an appointment to discuss other options. I did but felt uncomfortable about the upcoming discussion.
In the meantime I had also gone to an alternative practitioner to discuss both moderate discomfort in my hip joints at night and bone density. She had started me on a regime of high quality supplements, mainly fish oil, a calcium citrate-magnesium combo, and Vitamin D3. I also upped my exercise regime.
The primary care physician kept me waiting for 40 minutes after the time of the scheduled appointment. When she came into the office she sat down in front of a monitor and said nothing while she brought up my records. Then she spun the monitor around so I could see it. Displayed on the computer screen was my risk of osteoporotic spinal fracture – 12.4% – and hip fracture – 2.4%.
I was flustered and did not think to ask exactly how this risk is calculated and what it represents.
While I accept that I am at a higher risk of fracture than a young adult woman, I still feel my risk of fracture is not great and I don’t appreciate being made to feel fearful of my risk – or at least unduly fearful. I do not want to compromise other quality of life factors because of some very small risk of spinal or hip fractures.
She went into the risk of death from hip fractures. Yes, I am aware that a hip fracture is often the beginning of a downward spiral to death but this just doesn’t seem like the place where I am now in my life, while the risk of stomach upsets, oesophagus damage, and/or general malaise from a biphosponate seems much more immediate to say nothing of an increase in a risk of fractures in the extremities from this class of drug.
I personally know several women and one man, who claim to have had either fractures in their fingers or digestive damage from biphosphonates. Why do I need to take on risks that seem frequent to avoid one that seems remote? She made the point the risk numbers are based on an algorithm of some abstract standard but how I relate to that standard clearly wasn’t as important to her as adhering to the standard of care that has been laid down for osteoporosis.
She looked at me blankly as I asked for more details on how the guidelines are derived and how the risks of the medications are assessed. She kept repeating percentages but not their relevance to me specifically. I probably became more defensive and perhaps even rolled my eyes.
Before I knew it, she was accusing me of being “confrontational and aggressive.” She also started “attacking” my yoga practice saying forward bends could be dangerous. This demonstrated an ignorance of how forward bends are done in Iyengar yoga (the style I told her I practice) from the pelvis rather than curving the spine downwards. The front of the body is always kept long even in forward bends.
She also criticized my use of supplements saying they are not regulated. She said she would not recommend taking any supplements even though the regime I am on has improved the hip problem that mainstream doctors had not been able to help me with beyond recommending large doses of ibuprofen, a short term solution at best.
She recommended me to a website that evaluates supplements for purity. I read reviews of the site and discovered the owner/manager is a former big pharma executive and that the business model is suspect for both supplement suppliers (charging some and not others for evaluations) and consumers (offering “free passes” that are not really passes to anything but more pressure to subscribe).
Her second line recommendation was Evista, an estrogen receptor drug. Upon further research I thought this would be a poor choice for me, substituting some vague increase in bone density for an increased risk of stroke or blood clot. As strokes run in my family I would not be comfortable with this choice.
I explained to the doctor that I was involved with a website called RxISK.org that documents in an accessible way reported adverse effects to the drugs she was recommending. She only told me it was inconsistent that I cared about adverse effects of pharmaceuticals while taking supplements for which there was no reliable regulatory authority. I hesitated to pursue further her apparent faith in regulatory effectiveness regarding the safety of pharmaceuticals.
After years of drug safety activism, I find myself caught in the snare of ever expanding diagnoses of “disease.” I didn’t want to go there but when told “information is power” and that a screening test is just to give you information, well, it’s hard to say no.
But now I have a label – osteoporosis – and it’s working its little effects on my psyche and making me question every forward bend in yoga. I’m afraid of compressing my spine, of slipping on a wet pavement and falling down. Can I ever ski again? Will I have a “dowager’s hump” in ten years? The fear mongering is working and the doctor has an answer, a white slip of paper with Fosamax or Evista written on it. All I have to do is agree and I can stop being afraid. It’s so insidious.
And yet I completely failed at instilling any fear in my doctor. She dismissed the existence of RxISK.org with a somewhat arrogant flick of the hand. I need a site for my supplements (consumerlab.com) but apparently she doesn’t need one for medications. She’s quite sure that the risks regarding bone density as well as the risk-benefit profiles she’s been given on Fosamax and Evista are accurate.
The fact that the improvement in scanning technology and ever increasing investments in scanning machines coincides with expanding definitions of what constitutes osteoporosis seems to elude her or else strikes her as unimportant.
Her instinct for collaboration with me, her patient, is completely missing. I have nothing to offer and can raise no challenge to her mode of practice. My search for a new doctor apparently is not over and will have to continue.
This isn’t good enough.
An earlier version of this was published recently on PharmaWatch Canada under the pseudonym Sara Denton.
Also see Stevie’s Story about osteoporosis and alendronic acid.
Illustration: Fear of Falling, © 2013 created by Billiam James