This piece is the first of a series showing people struggling with the Kafkka-esque absurdities of modern healthcare. It is written anonymously. If you’d like to share your story, you can do so on the Share Your Story page. — David Healy
A little over two years ago my daughter’s partner was killed in a tragic accident while in the company of my son. Naturally, this caused terrible grief and sadness for both families. Our family doctor counseled Petra to immerse herself in her work, read, walk, and be assured that time would gradually soften her pain. He prescribed some sleeping pills to help her get to sleep.
Petra went back to work after a week or so but was frequently unable to face it, and after struggling for a month or so took extended leave. Some three months later she saw another doctor at the same clinic who declared that Petra had Depression for which she prescribed an anti-depressant, Cymbalta.
Her doctor explained that her brain was not releasing enough of the chemicals that prevent depression.
Petra said that the drug made her feel sick but that her doctor had told her this would pass. Her doctor had explained that her brain was not releasing enough of the chemicals that prevent depression, and that the anti-depressant would prompt her brain to release more of these chemicals — after a while, her brain would resume releasing the right amounts.
This sounded plausible, if ambitious to me, but I was a little concerned at the nausea and read the notes that came bundled with the drug. Worried by the long list of possible side effects, some of them serious, I called the enquiries number on the leaflet and asked how likely these side effects might be. The very polite receptionist took my number and dutifully called back with the explanation that these things only had to be reported once and they could appear on the list and so the chances of most of the bad effects was close to nil. This satisfied my request and I thought no more about it for weeks.
Also troubling was the existence of self-help sites and forums for people who had problems getting off these medications.
Petra showed no improvement, still had bouts of nausea, was sleeping badly, and began smoking heavily, so I started to look for more information. Google searches returned a number of drug information sites that stated briefly that Cymbalta was effective and well-tolerated but other search results on Cymbalta, anti-depressants, and SSRIs hinted at disturbing side effects. A couple of sites seemed overly dramatic and poorly presented but their existence troubled me. Also troubling was the existence of self-help sites and forums for people who had problems getting off these medications. It became apparent that it would be necessary to find some independent authorities and I sought out some government sites. Some of these had information for patients and prescribing information that raised more questions than answers.
I found a link to the UK enquiry into health 2004 ‘The Influence of the Pharmaceutical Industry” and read many of the depositions, questions, and answers. This was detailed and had both sides of what was clearly an argument about Pharmaceutical company influence on the health of nations. The Pharmaceutical company representatives were not very convincing in their submissions.
I raised the issue with my wife, who shouted at me.
Having established in my own mind that there were serious problems with Cymbalta and probably any of the SSRIs I raised the issue with my wife, who shouted at me that
“She has a chemical imbalance in her brain, she needs the medication.” I was completely surprised by this reaction and provided some written material that outlined some of the problems with antidepressants. Jeannette declined to look at any of it. I suggested to my daughter that I had reservations about her medication but she was not interested, pointing out that her doctor would know all about the various medications.
In addition to smoking heavily, Petra’s consumption of alcohol also increased resulting in many unpleasant times for her friends and family. About four months after beginning to take Cymbalta, Petra tried to take her own life, two attempts, a fortnight apart. On both occasions after drinking heavily she took all the tablets she could find, sleeping pills and Cymbalta the first time, sleeping pills, Cymbalta and Benztropine on the second occasion. The Benztropine had been administered to help a dystonia that had developed on the first trip to hospital and had been provided in an unmarked bag in case the dystonia should recur. Petra later explained that she thought that taking her own life offered a slim hope of finding her beloved David again and afforded a way of escaping the sadness that she felt might never go away.
Naturally these suicide attempts upset me terribly and I feared that the Cymbalta may have contributed to them. The first pharmacist that I asked about Cymbalta cheerfully drew me a diagram of a single neuron with more serotonin recycled into the synaptic gap when Cymbalta was taken. Another pharmacist that I know very well conceded that the only information that she had originated from Eli Lilly and it wouldn’t surprise her if it was overstated or just plain misleading. This was the first supportive comment that I had heard.
The first doctor wrote me out a script on the basis that I was clearly depressed about the entire situation.
I spoke at length with six local doctors. Three seem thoroughly convinced of the merits of SSRI antidepressants. The first even wrote me out a script for mirtazapine on the basis that I was clearly depressed about the entire situation, from the tragic accident to my daughter’s reaction and treatment. This after being told that I had serious worries about antidepressants.
The second, Petra’s doctor, conceded that the treatment may amount to no more than placebo but cried, “…what else have I got ? Benzos ?”
The third was generally defensive and unwilling to discuss the matter.
Our semi-retired family doctor whom she had seen first was skeptical of the new antidepressants, and doesn’t prescribe them. The remaining two I sought out after getting their names from a psychologist friend. These are doctors who regularly refer patients for psychological input rather than instituting a drug regimen immediately. Surprisingly, one of them confessed that he did not understand the trial data summaries and was simply skeptical by nature and on the basis of past experience.
All of the doctors assured me that the alcohol and sleeping tablets were more likely to blame and that such events were not associated with long-term use of Cymbalta. It was suggested to me that suicide attempts were more likely early in treatment when increased energy made acting on suicidal thoughts more of a possibility before the anti-depressant factor emerged. I didn’t find any of this comforting. Petra maintains that the Cymbalta wasn’t to blame, but I don’t see how she can be sure of this.
I had confidence that the possibility of a Thalidomide issue was a thing of the past.
Before researching the topic, I had imagined that drug companies were mostly interested in finding new medicines and probably modifying existing ones to deliver better health outcomes for society. I understood that this might be expensive and that there would be no knowing when the next break through might occur. New treatments could be expected to be more expensive than older, less effective ones. I further imagined that considerable trouble would be spent ensuring the safety of any new drugs given disasters like Thalidomide. I was quite sure that there would be government agencies testing all new drugs in order to be certain of their efficacy and safety. I had confidence that improvements were being made all the time and the possibility of a Thalidomide issue was a thing of the past.
Given that only safe and effective drugs would be available, I was happy to leave the choice of drug to the doctor, assuming that clinical experience would guide him or her to prescribe the most appropriate treatment for each patient. Clearly this was the view that Petra held. She had also developed a trusting relationship with her doctor and was finding my reservations about her treatment to be offensive.
I found it incredible that depression and suicide could be side effects of a treatment for depression.
The first and most disturbing thing that I felt was established about Cymbalta and the SSRIs in general was the unacceptable incidence of suicide as a side effect. I found it incredible that depression and suicide could be side effects of a treatment for depression. This would be like a new brake fluid that worked 5% better than existing brake fluid except for the occasional complete brake failure. This has to be a ‘show stopper’ by any measure. The use of statistics from drug trials in an attempt to reduce this fatal flaw to statistical insignificance utterly failed to move me. The question now was how can such an absurd treatment find it’s way into general practice? Could these claims of suicide during drug trials be wrong?
I was appalled to find that actual suicides had occurred during drug trials and were written up in tabular form along with (fewer) suicides on placebo. It seemed possible that depression leads to suicide and the drugs were simply ineffective. But suicides on placebo ‘washout’ shouldn’t be counted as placebo suicides and the fact remains that more suicides happen on the drugs than on placebo. This is much worse than ineffective, this is a problem masquerading as a solution.
This is a problem masquerading as a solution.
Putting aside the suicides, is it possible that a lot of people benefit considerably from the drugs? I felt that this must be the case and that doctors must see a lot of people who feel much better for the treatment. It was at this point that I read Irving Kirsch’s book ‘The Emperor’s New Drugs” and had the surprisingly large placebo effect in mental illness confirmed. This explains how people could genuinely improve on placebo or equally well on a drug that had no therapeutic benefit. Once we factor in the effluxion of time, possible altered circumstances, the fact that a doctor has been consulted, positive reinforcement by the doctor, plus an expectation of cure or improvement by the patient, it becomes impossible to discern the contribution, if any of an active drug. Nevertheless, the combined effect of all these things looks like ‘the drugs work’.
I think this explains to my satisfaction why doctors might think the drugs work; this and all the ghostwritten articles and company experts at conferences.
Petra has now spent months trying to stop Cymbalta. This is another story we weren’t prepared for that we hope to update you about soon.