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
I feel that many patients are ‘bullied’ by doctors. Psych patients sometimes have dosages increased when they complain of negative effects. General doctors don’t seem to want to work with one another on a patients behalf either. At least that was my experience. I was given invasive tests while sedated with Rx meds (valium,Versed) I probably shouldn’t have been given. They asked what I was allergic to, and I told them I’d hallucinated on Ativan but they gave me other Benzodiazepines anyway for a Brain Angio and for an Aortic Arch Angiogram. I hallucinated during both procedures especially the heart angio and even experienced a coughing fit during the procedure that the doctor failed to notate in his report. Later, a simple test by a different doctor revealed I did not have high blood pressure even though I’d been prescribed drugs for it for many years. That may explain the symptoms I had that resulted in all the expensive invasive testing. This level of questionable care is something that I experienced even in childhood. I endured a very traumatic situation of waking up on the operating table during a tonsillectomy overhearing the doctors discussing having “cut too deep” and before that they had given me some antibiotics that caused me to vomit and every time I would vomit, the nurse would come into the room with more of the same drug until I was almost dehydrated. I ended up in intensive care with the tonsillectomy. I have other stories from childhood with questionable care in hospital situations and even as an adult there have been so many troubling incidences that I can not bring myself to visit a doctor any longer at all. The 24 hr. BP monitor indicated “White Coat Syndrome” and I have probably had it since childhood. Another example concerning ‘bones’ is that I had x-rays indicating “no arthritis” and about six months later, (after a few weeks in a psych hospital and given benzos and more blood pressure medicine even though I’d been taken off blood pressure meds by a different doctor, and an anti-psychotic) new x-rays indicated “arthritis” and the rheumatologist I saw after being released from the mental ward, commented “it must be pretty bad to show up on x-rays with bone spurs.” So, what happens, people don’t just develop bone spurs over 6 months, do that? Anyway, it was more questions than answers to me. After the forced psychiatric hospitalization in 2006 where I believe my civil liberties were violated, I just cannot bring myself to visit any doctor again. It is really pretty simple. I have no desire to re-visit people who disrespected me and don’t even apologize for inflicting more harm when given the opportunity. Most people would not return to places where they have been mistreated for care. Doctors tend to stick together rather than stick up for the patient in their care, even when their colleagues are blatantly wrong. It’s a dangerous code of ethics (a white wall of silence) for the patient involved.
I took alendrotnic acid, calcium tablets statins and blood pressure tablets because I was now over 70. This was preventative medicine. two years later I had a massive bone growth in my mouth on the lower right jaw My jaw bone was doubled in size an there was bleeding between the normal jaw and the extra growth.
I immediately stopped taking any medication at all I felt much better with more energy
The bone growth continued to develop after about 2 years plus the extra jawbone started to fall off but it was developing now on the left jaw just the same as before even without any alendrotnic acid or extra Ca. At the time of me quitting any of the medication I requested and had a DEXA scan I did not have any osteoporosis at that time. WHY WAS I GIVEN THIS UNNECESSARY MEDICATION? I now have a very sore RHS mouth, although the RHS is back to normal. I just have to wait I guess and I am6 years down the line from the start.
Tweet from @MentalHealthLaw
Whenever a doctor accuses you of being confrontational & aggressive, just say oh no, you can get much, much worse! She “completely failed at instilling any fear” in her doctor by threatening with facts. Only INTENTION works for that. Reason fails. You have to be wiling to say, “You are wrong, and I will come after you for that.” How about, “Excuse me, I don’t mean to be AGGRESSIVE, I just want to start recording this…” It’s the cult of Pharmapsych! Maybe we need to deprogram people…
Well Sara I too have an osteoporosis story ! except my bone density problem was due to calcium going to my muscles instead of my bone due to parathyroid adenoma. But here is what happened when I saw a top Professor who did the TV promotional stuff to encourage women to have the bone density scan.
I went to this top Professor specialising in osteoporosis (not on the free NHS scheme but via my private insurance).
Oh dear, I had low bone density in hip and spine but not evenly which puzzled him.
He recommended I should take the bisphosphonate called Fosomax.. I investigated and found the following. In the US the drug label stated that it could cause perforation of the oesophagus and warned not to lie down or eat after taking it. I also discovered on FDA ADR reports it was high (in 1980’s) on list of ADRs for this problem.
The UK label stated words the effect ” take half an hour before eating- why not place pills by your alarm clock so you remember to take them before breakfast” no mention of why!
I decided not to take any drug except for the calcium tablets that Prof recommended. The following few months I was feeling under the weather – not 100% so to speak. I went to a consultant physician for a check up. Blood tests revealed high calcium in the blood…I stopped the supplement but the result was the same. A high calcium level can indicate parathyroid hormone problem, it could be due to kidney or as In my case, due to parathyroid adenoma. This was surgically removed and lo and behold my calcium returned to normal. Staff at an NHS osteoporosis unit I went to for follow up bone density scans, told me they had several cases of parathyroid problems causing low bone density and that the calcium level should always be checked before diagnosis.
Best wishes from Millie
Founder of APRIL http://www.april.org.uk
For Sarah, and everyone else struggling with osteoporosis. Love, Cathi http://cathicarolblog.wordpress.com/2013/11/30/why-osteoporosis/