Editorial Note: This chilling account of the effects of statin drugs brings out a key role for reporters to RxISK.org – we need good data on how long the after-effects of drug treatment can last. This data is rarely collected but is of critical importance when it comes to insurance and disability assessments.
A statin is a lipid-lowering agent and although the mechanism is not fully understood or agreed upon by the medical professionals – statins do appear to lower cholesterol. However is the lowering of cholesterol beneficial in reducing heart mortality and what are some of the consequences of lowering cholesterol? This is my personal experience and I do not wish to contradict or undermine those people who tirelessly work towards lowering cardiovascular disease.
“What has happened to you was rare, a 1-million chance of this type of reaction.” said Auckland doctor in 2002.
My husband Brian and I live in Auckland, New Zealand. Brian was an active person who enjoyed walking, swimming, writing and watching sport. He had solid computer skills in his job with a major airline and was responsible for paying about 700 staff. Brian was a good communicator and was extremely thorough and analytical in his work. He was able to do complex equations in his head and prided himself on accuracy. Honesty and confidentially were key to this job. He also contributed short stories to books held in the National Library and enjoyed looking forward to planned holidays.
That was until a weekend in June 2002 when our lives changed forever. On May 1st 2002 Brian started taking a statin prescribed by a cardiologist based on Brian’s family history and not his health. The cardiologist agreed he was physically fit and did not otherwise meet the criteria for a statin. No blood tests were taken.
Several weeks later Brian became seriously ill with a life threatening event we now know is called rhabdomyolysis which means his muscle tissue melted. This caused acute renal failure. Our GP did not recognize the symptoms which included severe pain in the right flank, frequent vomiting, nausea, no urine output, confusion and weakness.
The GP did not feel it was necessary to do blood tests until pressured by me to do so. When the test results showed Brian had renal failure the doctor’s response was to get Brian to drink a further 4 litres of water. This exacerbated the already dangerous situation. It was 5 days after the initial onset of these symptoms before Brian was hospitalized.
Once hospitalised at North Shore Hospital the doctors examined Brian and confirmed the renal failure due to the statin. Neither of us understood most of what was said but were grateful for their help. Brian was transferred to the renal unit at Auckland Hospital and started dialysis. This was now 7 days after the onset of symptoms.
During the course of his treatment both in the hospital and as an outpatient, Brian and I mentioned his weakness, pain, nausea, tingling sensations in many of his muscles, fatigue and frequency in urinating once his kidneys started working again. The list also included urinary incontinence, impotence, confusion, tiredness, widespread discomfort, nightmares, anxiety, thumping headaches and an inability to seize and understand facts.
While he was on dialysis Brian had what we were told 3 years later was a stroke. Neurologists have told us this was due to the extreme stress his body was under in addition to the toxicity from the statin.
Mandatory reporting of adverse reactions is not required in NZ, so I gave the information to the Centre for Adverse Reactions in Dunedin and it was also recorded at the WHO database by Merck Sharp and Dome.
Brian remained on dialysis for some time and eventually his kidney function returned but he remained very ill and was unable to do much without assistance.
In New Zealand we have a compulsory accident cover. It is called the Accident Compensation Corporation. ACC is the sole and compulsory provider of accident insurance for all work and non-work injuries. The ACC Scheme is administered on a no-fault basis, so that anyone, regardless of the way in which they incurred an injury, is eligible for coverage under the Scheme. Due to the Scheme’s no-fault basis, people who have suffered personal injury do not have the right to sue an at-fault party, except for exemplary damages.
ACC accepted our claim that Brian had a medical misadventure and he was assured by his case manager at ACC that any future treatment relating to his injury – for the duration of his life would be covered by ACC. This was in 2002.
ACC provided support with speech language therapists, physiotherapists, psychologists and ongoing treatment from muscular skeletal specialists.
When Brian did not make a full recovery he was retired from his employment and I left my full time job to assisted Brian with day to day tasks like showering and getting dressed. Making decisions were now often difficult for him, he was easily confused about what was required of him and exhausted much of the day. Logging in to a computer was much too hard for him and driving was initially impossible. Brian had become very vulnerable and emotional often weeping with fear and frustration at his inability to move on with his life.
I read as much as I could about rhabdomyolysis and muscle damage. We changed our diet to include far more vegetables, eliminated processed foods and reduced carbohydrates and under medical advice from overseas doctors I included – CoQ10, Omega 3, and magnesium.
I was also really concerned to find thousands of others world wide had been damaged by statins. I had information from the Centre of Adverse Reactions in Dunedin in 2010 which said 11 people in NZ have died from simvastatin and there are over 30 reports of rhabdomyolysis in their database. I didn’t ask about other statins. It is my belief that ACC and in general, the medical profession and pharmaceutical companies would prefer these statistics were not made public.
The first eight years after the adverse reaction were really hard for Brian and he has shown courage and determination to be the best he can. Many of the original symptoms from 2002 became more manageable but he still suffers from ongoing pain and is limited in his capacity to function fully in society. Until 2009 ACC was very supportive so we could concentrate on Brian’s rehabilitation.
However since 2009, ACC has continued to strive to ‘prove’ he didn’t have an adverse reaction to the statin or the symptoms from the statin injury are spent or most frustratingly that the symptoms are all age related or pre-existed 2002.
Over the next two years he was sent for assessment after assessment, in total around 15. Each assessment leaves him exhausted and traumatised. He was compelled to attend each appointment in order to preserve his entitlements with the ACC. Brian battled on and almost every specialist agreed with the original diagnosis. However it took just one report challenging the original diagnosis to determine that the effects of the injury were now spent. As a consequence Brian has now had his entitlements suspended.
This has directly impacted on our relationship and health. At times, both of us have felt we could not face one more day of this additional pressure. Brian’s nightmares and anxiety have become more regular and his speech and confidence in communicating with people has deteriorated as he has to endure the retelling of details of the original injury and subsequent illness to medical assessors contracted by ACC.
In 2012 we opted for Brian to have a muscle biopsy to ‘show’ he had long standing damage from the statin. The results did not show any mitochondrial damage but did show cell hypertrophy. The muscular skeletal specialist has explained that essentially the muscle cells which survived the rhabdomyolysis became super big and have contributed to the body wide discomfort.
Brian has also had a blood test to see if he had any genes that could predispose him to statin-induced myotoxicity. But he was negative for these tests.
To our knowledge Brian had no pre-existing health disorders, he didn’t have diabetes or any cardiovascular disease. But his father, mother and brother had all had heart attacks. So it is reasonable to assume that taking a statin to lower cholesterol would be just the thing for Brian. This is what the advertisements say. This is what the doctors say – at least the ones who haven’t read the impartial reports about cardiovascular disease and mortality.
It is strange then to think that Brian’s mother was on a statin but still had a heart attack.
His younger brother was on a statin for years and developed a heart problem and later had a heart attack and triple bypass and he is still on high doses of a statin. He has also developed diabetes.
Maybe lowering cholesterol isn’t the answer. Many well known doctors and researchers are bold enough to query the statistics provided by the pharmaceutical companies. And to their credit many doctors we have dealt with over the last 11 years have been very supportive and for that we would like to thank them.
Could it be that inflammation or other factors cause atherosclerosis? Is animal fat relevant? Does a diet full of processed foods affect our heart? Would we be better with a diet rich in olive oil and fish? Physicians, scientists and science writers are debating these issues. Having a debate about it is good. It’s a start. Our goal should be to reduce disease but not at the risk of damaging other parts of the body. Nobody should have to go through what we go through every day.
Persisting and unresolved damage from the statin injury has remained a problem for Brian, but we must also endure ongoing legal battles with ACC to ensure his Claimant Rights are being met.
There are still too many doctors and health professionals who are not willing to look at drug side effects, overall risk versus benefit and most importantly the need to remember the Hippocratic Oath: ‘I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone.’