Emailing: Doctors should take note Re Installment 3

June 14, 2008

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Lipitor (atorvastatin and Related) - Rxboard Doctors should take note Re: Installment 3 Posted By: SharonWednesday, 11 December 2002, at 12:56 a.m.

People who hit the Lipitor boards do not find them by casual web surfing - they come to them in desperation because they have experienced life-altering disabilities while taking Lipitor and have been told by their doctors that the symptoms couldn't be related to Lipitor, and even if they are, "don't stop the medication because the benefits from the drug are worth the side effects." (The latter is written on my husband's hospital discharge papers.) Doctors would do well to note that there is a growing body of consistent testimony to statin damage on the internet. Certainly it is posted by uncredentialed lay people, but the consistent litany of reported adverse effects correspond to those in the published medical studies, AND to the adverse effects published in the physician's insert, AND to the adverse effects published by Australia's drug agency AND in columns like the People's Pharmacy. Yes, you can't believe everything you read on the internet, but when hundreds of people come together in frustration, it might bear YOUR looking at it - even with a healthy skepticism. (And if you ask nicely, and can prove you are a doctor, they might just send you their 4-inch thick copies of their medical records so you can satisfy yourself that they are not just hobby fiction writers.) The common threads among the hundreds of posts are 1) the symptoms are life-threatening, or life-changing; 2) the doctors cannot account for the symptoms, but deny that statins could be involved; 3)after thousands of dollars in testing, the doctors continue to shrug and gesture with palms up; 4) after statins are discontinued (LONG after, often for as long as the statin treatment's duration) the symptoms start to subside, but some of the nerve damage is apparently permanent. In case you haven't noticed, there is a consistent theme of pain, neuropathy, myopathy, memory loss, cardiomyopathy and other problems - all of which are typical of flawed oxidative phosphorylation or mitochondrial damage. All of these symptoms are familiar to neuro-muscular specialist pediatricians, who see the syndromes in children who have mitochondrial damage due to genetic mutations or some other problem that causes a deficiency of CoEnzyme Q10. Mitochondrial disease experts are very aware, too. Physicians who treat adults, however, are unfamiliar with this constellation of symptoms, because - except for the cases where statins interfere with the biosynthesis of CoQ10 - there is no normal cause for this kind of mitochondrial damage and cellular respiratory chain damage by the time the patient has survived to adulthood. They are also consistent with the findings, with the abstracts published by NIH, of medical research by, for example: Dr. Muldoon (who found that 100% or statin patients had a measurable decline in cognition vs 100% of the placebo group who gained in cognitive testing, after a 6 mo. double blind statin trial.) Dr. Gaist (whose 3 studies show peripheral neuropathy and polyneuropathy at 26 times the normal rate among statin takers - with higher rates for patients over 50 on statins for 2 or more years) Dr. Phillips (who proved with muscle biopsies that the statin patients who complained of muscle pain - even without elevated CK - had mitochondrial damage that accounted for that myopathy pain) Further, I can honestly tell you that in my own case the "web surfing" was with a purpose: to try to find an explanation for my husband's symptoms on Lipitor. Guess what? They match the others posted on this board, on the AARP board and on http://www.dispace.com/message_boards/drugs/Lipitor/default.htm Had he been told that he would suffer brain damage in exchange for lower cholesterol, he would not have taken the Lipitor. His brain damage symptoms (with NORMAL PET and MRI scans of the brain, read by 3 specialists): Short-term Memory Loss, Aphasia, multiple bouts of transient global amnesia, cognitive damage that took him from a successful CEO/business owner to neuropsych testing that ranked him in BELOW the 1 percentile. He works with a cognitive rehabilitation therapist to handle lists of 3 and has plenty of time to do it because his business is destroyed at 54 years old, and he is incapable of working, at a time with our 2 kids now in college. Then there is his constant pain - he was once very athletic, now if he walks the equivalent of 100 yards or stands for any short period of time, he is in excruciating pain and a state of physical collapse for two to three days thereafter (NOT depression, it is physical pain and lack of stamina - muscular and nerve pain). He recently commented, after having accidentally run a large splinter (the size and thickness of the wide end of a flat toothpick) up under his fingernail all the way to the top of the quick, that the pain from the splinter except at the time it actually occurred, simply blended into the background pain that he feels at all times. "The memory loss wouldn't drive you to suicide, but this level of constant pain could," he explained. This is after 3 years on Lipitor and now 11 months off, with ongoing myopathy pain, CK measurements elevated, occasionally over 500+, and neuropathy diagnosed by 2 different neurologists. And rule-out after rule-out after rule-out via doctors and specialists, including brain surgeon, fronto-temporal dementia specialist, neurologist, sleep apnea neurologist, cardiologist, neuromuscular specialist, neuropsych specialists, and test after test after test. We have averaged over one physician appointment or test per week for the last 11 months, in addition to the cognitive rehabilitation therapy sessions. We have been married for 34 years - he is not faking the symptoms. He has not read up on the internet boards, because he cannot concentrate long enough to process the posts (and testing indicates he now can't handle processing sentences of 7 or more words). His auditory retention is not any better, so he isn't reacting to suggestions read to him from the internet. BUT the Lipitor postings are indicative that others sufer from some or all of the same constellation of symptoms - AND the common denominator is Lipitor and other statins. AND we know that Merck determined in 1989, and documented in a series of US Patent applications, that statins interrupt the melvonate pathway and block the biosynthesis of CoQ10, AND we know that a CoQ10 deficiency would be expected to cause Ox/Phos problems, AND we know that these sorts of problems correspond to what Lipitor boards are full of. So, take these posts with a grain of salt, yes. But wake up and smell the coffee, DOCTOR. There is a growing population of walking wounded who take Lipitor - hear them ROAR. The insurance companies are not stupid. Thousands of dollars in diagnostic tests for the same sets of elusive symptoms are bound to cause interest from the insurance companies, if the doctors are still in denial. This isn't politics or religion where opinions are rife. This is a group of gravely injured, devastated, frightened and ANGRY people who hurt, and who are looking for someone to believe they hurt - because doctor after doctor refuses to believe them.