When I first wrote of my personal side effects of Lipitor, my words were focused purely on transient global amnesia (TGA). This is because, in 1999, shortly after this drug was started by my doctors at Johnson Space Center as part of my annual astronaut physical, this is what I experienced.
A year later, they re-started me on the same statin, Lipitor, at half the previous dose, saying that my first 6-hour episode of TGA was only a coincidence. Two months later, I again experienced TGA. For twelve hours I was a thirteen-year-old high school student who knew my subjects, teachers and every kid in my class (according to my worried wife) but with no memory for my entire adult life. I laughed when they told me I was married with children and a doctor. I could not have doctored a mouse and certainly had no children. I was thirteen! Fifty-six years of rich and fulfilled adult life had vanished from my mind as if it had never occurred.
After recovery and several years of research on statin drug side effects I considered myself to be lucky to have had only TGA, for when it is over, you are back to normal. Not so for most of the other statin victims in my bulging repository with their persistent neuromuscular problems, short term memory loss and ALS and Parkinsonism-like reactions.
But now, having read thousands of reports from statin-damaged people, I wonder what the true effect of a statin really has been on my body? For suddenly, in two and one-half years, I have grown old, with weakness and easy fatigability, my coordination is terrible and my reactions are slow.
Back in 1999 when Lipitor was first started, I lived on the side of a mountain. Climbing that mountain was a normal, daily exercise event for me, as was cutting and splitting my own wood and doing odd jobs for my neighbors. No job was too great, from cutting up an aged maple tree downed by unusual winds to replacement of a concrete porch floor cracked by frost. Doctor though I was in the past, handy-man I was in my present retired state. Seemingly, I thrived on physical activity and work and it had always been that way from my early life on a dairy farm - the work ethic of being born and raised during the depression years, I suppose.
By 2003 I had noted the gradual onset of unusual tiredness, easy fatigability and weakness. Cutting and splitting my own wood now required surprising effort. Then it seemed my low back and legs ached uncomfortably after only minimal exercise as if they had been strained excessively. I experienced no discomfort during sleep or recumbency, only after activity. My flowerbeds went untended.
Yes, I was older but these were not what one usually expects with age. Change was evident on a scale of months not years. This was most definitely not the usual aging process. Trust me, after 32 years of family medicine I knew that and as a doctor I had checked my vitals from time to time curiously searching for clues. This was not heart or lung, I deduced. And my annual physicals were always normal. This was some non-specific muscle weakness problem.
X-rays showed moderate degenerative changes throughout my lumbar spine with some narrowing. Other imaging studies showed mild to moderate spinal stenosis. Response to steroids was positive. Although the surgeon admitted he had seen far worse imaging studies, surgical decompression was done with titanium rod stabilization.
Six months post surgery I realized my post-surgical recovery was going backward again rather than forward with increasing weakness and discomfort in low back and legs with the addition of awareness of in-coordination. Walking a straight line, which most of us do without thought, now began to require some concentration.
Then came my never to be forgotten first episode of food aspiration. While enjoying a spinach salad with pecans during Christmas dinner with friends, an entire pecan half, well lubricated with olive oil, slid down through my larynx into my right lung. This is one of the hallmarks of ALS and of course I had been dwelling on this possibility because of my repository of reports from statin damaged victims.
In just three years I had gone from a physically fit to a doddering old man wondering how all this could have happened so fast. I was slow to recognize the truth for initially I was convinced that my problem was mechanical and fixable by surgery.
Then in my repository of statin victims tales I read of case after case of statin associated fatigability, muscle weakness with progressive disability and began to understand why I might never get better. An ALS-like condition was my suspected diagnosis, I thought, hidden by the reality of mild to moderate spinal stenosis.
The X-ray evidence of degenerative change was probably about normal for my age of 76 and unusual history of physical activity. My initial tiredness, weakness, in-coordination and leg aches and all that has followed were somehow triggered by my exposure to statins, just like the hundreds of other cases in my files.
My total time on Lipitor was no more than five months at 5-10 mg dosing, low by today's standards. I had joined the ranks of thousands of other people whose physiology had been seriously compromised by statins.
Research evidence about the more serious side effects of statin drugs began to flood the internet. Statin induced mevalonate blockade with the consequences of CoQ10 and dolichol inhibition now was documented by research rather than just suspected.
Then mitochondrial mutations induced by statins began to be reported as the cause of increasing numbers of serious disabilities affecting neurons of the brain as well as causing muscle damage. Inhibition of CoQ10 was allowing free radical excess to mutate our mitochondria. The World Health Association reported excess ALS in statin users world-wide. A new word was coined, cerebromyopathies, and currently, reports of ALS associated with statin induced mitochondrial mutations are in the research news.
At the present time there is no way to prove statin etiology, just the large numbers that occur shortly after statins are started. And no, being based on mitochondrial mutations, it does not go away when statins are stopped.
Cases are accumulating, more rapidly now that much higher dosing is used. We have no markers, no tumor mass, no blood level of a substance, no measurement that shouts "statins." My rheumatologist suggested ALS as the best fit diagnosis. She had already had my nerve and muscle conduction studies done, which were reported as within normal limits.
My neurologist generally agreed that ALS fit with my muscle atrophy and weakness and volunteered that he wondered about the mitochondria. He said he had been seeing much statin damage of this type and suspected mitochondrial mutations might have occurred. As a matter of fact he was thinking of specializing in just this area.
The more I thought about it the more I agreed with him. This had come up before many times in my reading. In fact many researchers think that mutations in our mitochondria are a primary factor in chronic disease and old age. Is it possible that statins were subtly damaging our mitochondria, producing premature aging and debility? The more I think about this the more worried I become. Right now that is the best explanation for the clinical picture that has emerged over the past decade.
At the present time my own case of Lipitor associated ALS has progressed to the point where I have finally had to give up my long daily walks. Because of my lifetime focus on muscle conditioning and regular exercise, I delayed this action much too long. Instead of conditioning my weakened muscles I was straining them far beyond their capacity.
The best way I can describe my reasoning is picture a muscle as made up of thousands of muscle fibrils. By now I had lost so many myofibrils that the remaining 30-40% of normal myofibrils were insufficient to move about a man of my stature. Just to get out of a chair and walk across the room was a major effort. Extra exercise is counterproductive, straining muscles already working as hard as they could.
I have begun the use of a cane for short trips. Recently, on my return trip from collecting the daily mail, a gray-haired neighbor lady came to her doorway as I walked past her driveway, concern written on her face, and she asked me if she could drive me home. My performance walking with a cane was that bad. My mood was black for the rest of the day; bless her heart! If I really concentrate I can walk a straight line.
I see my case as being primarily of the spinal muscle type and can imagine "ragged red myofibrils" in the muscle biopsy I have yet to have. I am not about to waste insurance dollars for expensive tests when there is so little proven help. I know what the diagnosis is. I have some 250 other statin victims in my repository just like me. If it looks like a horse, sounds like a horse and smells like a horse, it's a horse! And I believe Lipitor caused it but I can't prove it other than by the sheer numbers of victims walking this path.
My Statin Story Update: I finally have had to stop my daily walks, a life long habit. Muscles in my legs and low back cannot be rehabilitated. I have just so many remaining functional muscle fibers and finally I have reached the point that just standing for a few minutes is all I can do.
I can follow my wife around with a grocery cart pretty good but without it I break into a cold sweat and look for a chair. My talks on statins are no longer on my feet before a chart or blackboard. I sit down just lke everyone else and it works well. Before the diagnosis was made I used to wonder why I was drenched in sweat at the end of my talks. Never occurred to me it might be ALS and that I was close to exhaustion.
I have never been exhausted before. My neurologist and I are both convinced the mechanism of action must be mitochondrial mutations. After all that's what statins do, they wipe out CoQ10 and glutathione, our primary anti-oxidant defense against free radical damage and mitochondrial mutation.
Duane Graveline MD MPH
Former USAF Flight Surgeon
Former NASA Astronaut
Retired Family Doctor
Updated April 2008
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