The presumed mechanism of action of such cases have been statin induced cholesterol inhibition, ubiquinone depletion, some combination of the two or some other as yet un-identified link.
In some of these cases the symptoms have regressed after stopping of the statin drug lending credence to possible statin drug causation. In other cases various supplements have been utilized in addition to stopping the statin drug, with varying degrees of improvement in the clinical picture depending on the nature of the supplements and dosages used.
Since there are no therapeutic guidelines for such cases, treatment plans have been largely intuitive. Other cases have gone on to the classical forms of these various neurodegenerative diseases despite cessation of the statin, provoking the question as to what role, if any, their previous statin might have played in "triggering" their illness.
The following are a few of the reports I have received from readers of my books and from websites on the subject of Neurodegenerative Diseases and Statin Drug Use.
It may be of interest that two of these reports were experienced personally by MD specialists.
1) I have found out my creatinine kinase was 386 on March 31, 2005 and was taken off Lipitor. I asked for my old records and found that it was at 237 in February of 2004 when I had been taking Lipitor for 14 months (20mg per day). With all the research I have done, I feel this was the cause, however, my doctor said he does not know what is wrong with me. Multiple Sclerosis was ruled out but I have neuropathy from elbows to hands, lost fine motor skills and walk unsteady. I have weakness and loss of muscle in hands. I fell down the stairs last week. I work a physical job, need my income and I am only 55 yrs old.
2) I am interested in telling you about my problems with statin drugs. Two years ago after having been on simvastatin for years, I developed a great deal of stiffness and weakness in my legs and arms and had it diagnosed as Polymyalgia Rheumatica (PMR) as I had an elevated ESR of 70. I was put on prednisolone and the stiffness etc. was less but I still had the weakness. For approximately 12 months I took the prednisolone and simvastatin. At first my ESR went to 20 and then climbed over the months to 90 at which time I went to a three different specialists. There were several opinions, which seemed to suggest that I hadn't had PMR at all and some thought was given to the problem being caused by simvastatin.
I stopped the prednisolone in July 2004 and then Lipex in Nov. and my ESR have come down a great deal. Although most of my weakness and stiffness has gone I am left with a degree of soreness and weakness in the muscles in the top of my arms. At one time during this period I also had incredibly sore heels, which I now have read about as being another side effect. I hope that the problem with my arms will resolve itself but I am now certain after all that I have read that I have been another victim of simvastatin side effects.
3) I started my husband on Methyl B-12 (sublingual form) at 5,000 mcgs twice a day (morning and evening) and after a couple of days I am starting to notice improvement. He is not as confused and actually can complete a dual task without error or frustration and confusion. So this is giving him additional benefit in cognitive function over and above that obtained from just stopping the Lipitor. It is my "uneducated opinion" that the proper dose of sublingual Methyl B-12 are essential, particularly for someone with long-term, severe cognitive and memory problems. I suppose there is still the possibility of Alzheimer's disease but now I have reason to be optimistic that his condition was drug induced.
4) I am 50 years old. In June 2002 I had a stent put in my heart and was immediately prescribed 80mg Lipitor daily. Everything was fine until December 2004 when I noticed partial vision loss in my right eye. The lower half of my vision in that eye looked as if I had looked at a bright light and looked away I can still partially see through it but with difficulty. Within a couple of weeks I became very anxious and depressed for no reason I could discern. I even had a full- fledged panic attack, which culminated with the feeling I was going to die on the spot. I went to my GP the next day and he was not able to find anything wrong with me. I also went to an optic neurologist who did an MRI and said he could find nothing wrong with the eye itself. Later he did a Visual Evoke Response test revealing that there was some problem with the nerve, but he didn't know what. The next test he wants to do is a spinal tap, which is already scheduled.
After finding this information this past Friday I'm thinking I might cancel that appointment. I have tried to contact my cardiologist but his nurse said I should just come in for an appointment, but that won't be until April 7th. I can't wait, I already am cutting my dose in half and will stay at that level for two weeks, my plan is to then cut it in half again for two more weeks, then go off altogether. Here is a complete list of all the symptoms I have noticed in the past 3 months: Partial loss of vision in right eye, headaches, depression, anxiety, fatigue, tingling sensation in left arm and leg, pressure on the right side of my head, left eye twitch, muscle aches, muscle weakness, muscle cramping and slight chest pain.
By the way, my last cholesterol report as of Jan 2005 was LDL 64, HDL 41, Total 117, and Tri G 127. When I asked the nurse about reducing my dosage after getting those results she said that the only reason my readings were so good was the Lipitor and I should continue with my current 80mg dose. She also said the Doctor said I was still in group B - whatever that means. I feel like I have been trapped in a prison, complete with a torture chamber. Until I found the many statin drug articles and stories on line this past Friday things looked pretty bleak, now I'm starting to see a light at the end of the tunnel - but it can't come soon enough! My cardiologist so far has conveyed the notion that if I'm not on Lipitor I'm doomed. The way I feel right now I'd rather live shorter feeling good than a long time being miserable.
5) So we went in to see the Doctor this afternoon. As a concession to my on-going effort to confirm the diagnosis of this ostensible mitochondrial dysfunction of mine, my doctor has agreed to drop my statin dose to 5 mg / day after my next catheterization for its value at reducing arterial inflammation. Since I will be on Ticlid for several months thereafter and will have to have my blood work tested every two weeks anyway we can monitor the effect of the diminished statin drug on my cholesterol levels and see if it reduces the effects of my morning 'fugue'.
6) My father began taking Lipitor around May 2002. It was shortly after that time that I noticed some changes in him. Sometimes he'd start a story then lose his place and other things were happening that he'd forget.
This past summer (July 04) after being on Lipitor for almost 18 months, my Mom watched as he paused in writing a check to pay a bill. This is something he has always done, manage / pay all household bills. He couldn't remember how to write out the long hand form of the amount of money. He also became very quiet. Normally, he's the life of the party and wanting to chat with everyone. Instead he became quiet and would sit by himself at parties or with my Mom. Usually he'd be the one that would be the 'social butterfly' and leave my Mom. After my Mom mentioned this to her chiropractor, she was given an article on some of the side effects of Lipitor (it was an article from Newsweek). After reading this article, my Mom insisted that my Dad's primary care stop his Lipitor.
My father has undergone a CAT scan, and MRI which have proved to all be normal. He also had some cognitive testing done which ruled out Alzheimer's. We met with a neurologist last week, who wanted to run more tests. During the appt. the neurologist mentioned he thought it might be Frontal Lobe Dementia. At that time, those were merely three words. Now after researching online, I have discovered this horrible disease (Pick's disease) and there is no cure and no treatment. Frontal Lobe Dementia has the exact same outcome as Alzheimer's; the only difference is there is less known about it. We asked the Neurologist if Lipitor could be the reason behind this. Without hesitation, his reply was No.
7) I have Familial Hypercholesterolemia and a horrendous "bad" cholesterol level that has NEVER been reduced to a medically satisfactory level. I started taking statins as soon as they were an alternative to cholestyramine, which was disgusting to take. I have experienced just about all of the side effects that I have, fairly recently, discovered to be rampant among statin users. All of these effects were dismissed by my doctors, none of whom took the connection seriously.
I suffered the most trouble when, after my first cardiac catheterization, my cardiologist increased my dose of Lipitor to 80mg daily. I developed huge problems with my gastrointestinal tract: I found it difficult to swallow, developed peptic ulcer disease and GERD, gastritis, and a hiatus hernia. My suspicions about Lipitor were not accepted by my doctors. Only when blood work came back with high CK levels did they tell me to stop taking Lipitor. Meanwhile, I was falling over with syncopes. One occasion I fell down the porch steps and badly wrenched my leg. On others I fell down flights of stairs and hurt my back. I was given a Tilt-Table test which was positive for vaso-vagal. All further symptoms of dizziness, vertigo, nausea and fatigue were attributed to VV Syndrome. I had skull-splitting migraines, got hospitalized from life-threatening dehydration and had difficulty with transient loss of vision in one eye. I felt as if my feet were often standing in hot water, my fingers tingled and so did my toes. The slightest real exercise caused overwhelming muscle pain and overall fatigue.
When I moved house it took me four days to get out of bed because I had no strength. My face sometimes felt numb in some areas, I experienced a loss of power in my hands. My heart developed leaks and regurgitation; sometimes it didn't beat as it should. By this time I had told the cardiologist who did my second catheterization that I thought Statins were a huge contributory factor to my vascular problems. He told me to take Lipitor again. I did not do so because I thought it was a poison to my system.
In the middle of 2003, having taken myself off Statins, I started finding myself lost momentarily in familiar places. I forgot where I was going and why. I couldn't remember my telephone number or anybody else's. I received letters from people concerning letters and calls I made but did not remember making. My son brought in a trampoline that I had ordered by computer in the middle of one night. I don't have the strength to remove it from the box! In December 2003 I fell down the stairs at 2 am one morning. I did not know why I was near the front door. Three hours later my son heard me fall down stairs again - this time I was fully dressed. It was 5 am but I thought it was afternoon. I told him I was going shopping.
I was terrified that I was losing my mind. I went to see my doctor and he sent me for an MRI. It showed changes in the white matter of the left hemisphere of my brain. People noticed that I was slurring my words and couldn't make my mouth form the words properly. I saw a neurologist and he gave me Plavix. He said the arteries were going into spasm. He advised that I take a statin again because I have hypertension and many high risk factors. I was unsure. In March 2004 I had such bad chest pain that I went to the ER in the middle of the night. It was heartburn, two days later I had a 4 day episode of stroke like symptoms and Total Global Amnesia. I can't remember a thing but my family and friends were terrified that I couldn't stand or hold a cup to drink or feed myself; my manner changed and I became aggressive and insulting; I went in and out of total confusion. I demanded my car keys and fell down the stairs trying to get away.
The doctor thought I'd experienced some sort of seizure or stroke. I totally lost 4 days. I saw more neurologists; they all said my symptoms were "bizarre." Nobody would consider a connection to Statins, and to be truthful neither did I, because I had stopped taking Lipitor. Everybody was thrown by the fact that I gradually recovered though left with impairment of my short-term memory and language ability. I decided I'd had TIA's. I was advised to see a surgeon. Following my instincts, I found out about carotid surgery, and decided I didn't want anyone chopping on my neck, and went, instead, to a neuroscience center. Family and a friend came with me and they told the neurologist what they had seen when I had episodes. I brought up Statins side effects; again I was assured these were not caused by Lipitor. I had MRI and MRA scans and EEG and transcranial Doppler testing. I was sent for a Neuropsychological test at the head injuries center.
Testing quantified the impairment. Frightened, I decided that I must have had a stroke. I taught myself to write with my left hand, with difficulty, because I can't hold things and make fine motor movements as well. My cholesterol level was above 400. My doctor told me I had to take a statin. I refused Lipitor but was persuaded to take Crestor at a 10mg daily level. I wasn't happy about that; but I was scared of having a major episode again and possibly never coming out of it.
I was scared about going out on my own and of driving. I became more and more isolated from other people as I felt "dumbed down." I used to teach history and had an excellent memory. I am 52 years old and, now, I couldn't remember what day it was or remember simple details from a story. I stopped watching television shows because I couldn't remember what had happened and was unable to follow the plots. I was very, very, frightened. Now, on Crestor, I couldn't sleep much and, when I did, I was woken by vivid dreams. My legs twitched and I felt short of breath. My kids admitted that I "was a shell of my former self." It was suggested that I apply for disability status.
My gastroenterologist is currently doing testing on my GI tract. He said I probably have Multiple Sclerosis. I am horrified, because this was on top of uncontrolled FH and hypertension. I was even more anxious and depressed. I got on the websites about Statins and I discovered Crestor was also regarded as "dangerous." What I then found out made me really, really, angry. Why were all the doctors discounting what all these people were saying about what had happened after they took Statins?
I called Pfizer, of which I am a shareholder, and their "product specialist" blew me off completely. They didn't even offer a biochemist or a physician, she was a nurse. I printed up a lot of stuff I found about Statins and called the neurology center. My doctor said he had never seen anyone damaged by statin side effects. I said, "what about me?" When I tried to trace the course of my major problems in the last decade and a half I discovered that they fitted totally with statin side effects.
8) I am horrified by the recent proposal to give people with MS statin therapy. They would almost certainly suffer adverse effects and the Drug Company and medical people attribute the cause to the course of the disease. I hate all the media advertising about statin drugs (and Viagra etc.) These drugs are not candy and it is unconscionable to create a demand among many with normal, now reclassified as high cholesterol. I am going to sell all my stock in producers of stain class drugs because I am certain that it is just a matter of time before there is a recall and a total medical disaster.
Meanwhile, I thank God I found out about the TGA because I thought I was demented. Please get information to everyone who is going to be pressured into taking this poison that we still don't really understand the full effects of. My cholesterol is three times normal but I refuse to take a statin. I think it is possible that I have a mitochondrial myopathy problem caused or at least triggered by statin drug therapy. I am going to take ubiquinone and Omega 3 etc.
9) I think that Statins come with their own side effects but the drug can also trigger another illness in the patient. Getting worse may not be a function of the statin but a function of the other illness that was set off by the use of Statins. We see that with Parkinson's and I am in contact with a few cerebella ataxia where it is also true. These patients (and me) continue to get worse even after stopping the drug. It looks like Statins act as a trigger for another illness.
10) I have continued both my Statins effects and Parkinson disease. In my search I have found a depletion of glutathione is a hallmark in Parkinson disease, and currently a study utilizing IV glutathione for PD is being conducted at our state university school of medicine. Glutathione is a thiol. My husband is calling Pfizer next week to speak to a scientist to learn whether glutathione is one of the thiols depleted by atorvastatin, thru what mechanism, and to what degree. I will let you know what we uncover. We have equivocated about my husband availing himself of this therapy since it is controversial and experimental With the realization that glutathione may be one of the thiols blocked by Statins, the utilization of such therapy seems more reasonable. I continue my writing campaign to anyone connected to Statins.
11) Because Lescol wasn't affecting my cholesterol enough the doctor prescribed Lipitor and within months there was a drastic change. I developed a balance problem and walk with difficulty. I have slurred speech, a pain in my left knee when walking and stiffness to my body when taking Lipitor. I have seen a neurologist who said I probably had cerebral insufficiency, an orthopedist who said I had arthritis, another orthopedist who said I didn't have arthritis and an internist who just doesn't know - all this after numerous x-rays and MRIs. For some reason I suspected the Lipitor and decided to stop it even though I knew the doctor objected. After two weeks the knee pain disappeared, my body stiffness was gone and I'm not as tired as I was. Walking is difficult still and my balance is not good. Also, my speech is still slurred and I don't feel as alert as I should be. Two months have gone by since I stopped the Lipitor and even though there has been some progress, I'm not sure there hasn't been irreparable damage.
12) Today I finally received the following report from my doctor, who confirms what he told me: that my speech and swallowing difficulties were NOT caused by ALS, but probably were caused by Lipitor! I have included everything that he said except that I have not included his name. (Before I release his name, I want to check with him about having
his permission to use his name; I hope that he will say "yes" and that he will be willing to talk about my case.) The neurologist, along with my speech therapist...and of course, me....were all ecstatic because of the encouraging EMG report. My neurologist tells me that what has happened in my case is very rare indeed.
13) I am interested in whether hand tremors have been listed as a side effect to Lipitor. My husband has been taking the drug for three plus years and just recently developed a rather coarse hand tremor, along with a stumbling walk. He has changed from rubber-soled shoes to leather ones due to frequent "tripping" episodes. His affect has changed from that of bright, attentive, humorous and insightful to one of flat and humorless. I have noted his driving skills have deteriorated, as well as other mechanical skills. He used to pride himself on being able to manipulate and solve mechanical problems, but now avoids anything mechanical. He also was a detail-oriented individual, who loved nothing more than following a set of complicated directions. Now he requests someone else read and follow the directions.
He has begun to require more sleep than in the past and often takes a nap if time is available--something I have never seen him do in our 33 yrs. of marriage. I have thought of Parkinson's disease, but in discussing my concerns with my sister last evening, she related that her husband has begun exhibiting all these symptoms also, including the hand tremor! She too was concerned re: Parkinson's. Her husband was tested by a neurologist for both Parkinson's and Alzheimer's and both tests were negative. They live in one state; we live in another. Her husband and mine are of similar age. They share one drug in common--Lipitor! Could it be?
14) I was on Lipitor for three years; complained of hand and stomach cramps to my doctor and stayed on the drug; finally went to see a neurologist who promptly diagnosed me with ALS and gave me three to nine months to live. My sense is that Lipitor affects the myelin sheath.
15) While looking for information on Parkinson's disease, I came upon your website. I have often wondered if TGA is somehow connected to Parkinson's. I am not sure how old your article is on TGA. I have studied the web for the past 5 years concerning TGA. My husband had an attack in July of 2000. Your article on Lipitor was the first time that I ever read of the relationship between the drug and TGA. My husband used to be on Lipitor before he was put on Pravachol and I do believe that he was taking Lipitor at the time of his attack. We will be going to his doctor on the 31st of August and I am going to have them check his records. He is now taking Zocor.
My husband and I were getting ready to go to the hospital to be present at the birth of our son and daughter in laws first baby. He went to take a shower and when he got out he asked me where we were going. I thought he was kidding. He didn't even remember that she was pregnant. I of course thought he had a stroke and called the paramedics. He was transported to the same hospital where the baby was born. They told us after many tests, that it was a classic case of TGA. The doctor that he had at the time insisted that he had a TIA but his Neurologist confirmed in a subsequent visit that it was a TGA.
After the TGA I noticed a difference in my husband. He was sent for a carotid artery study and many other tests. He has been diagnosed with Parkinson's disease for the past 2 years. I now wonder if this is true Parkinson's or if it could be caused by the meds. It is very frustrating to say the least. He has lost the use of his left hand and has had to take an early retirement
16) Yesterday I went up to the teaching hospital in my area and they said that I had MSA. A summary of MSA is: (Shy Drager syndrome) Multiple System Atrophy is a neurological disorder caused by degeneration of cells in certain areas of the brain. These control a number of different body systems; hence the name. They include functions of the autonomic nervous system (such as the control of blood pressure, sweating, and bladder function) and the motor systems (such as muscle activation, movement and balance). MSA affects both men and women. Symptoms usually start between 40 and 60 years of age. The cause of MSA is not known, but is neither inherited nor contagious. I don't know anything for sure but I think that Statins may have played a role in my developing this condition.
17) I have read articles about side effects from Lipitor. I have taken other Statins without major problems but after taking Lipitor for three years, my problems are almost identical to yours. My balance is bad, writing is difficult, and speech is slurred and motor skills diminished. I have seen neurologists, orthopedists, etc. and they came up with diagnosis of basilar insufficiency. They don't know for sure, however, just guessing. I can pinpoint when my walking, speech and imbalance started and they coincide to within a few months after starting Lipitor. I stopped Lipitor in Sept. 2004, and no longer have the muscle aches and stiffness but the other symptoms remain. I'm a 72-year old woman and too many problems are attributed to age. I was very active before but now activities outside the home are seriously curtailed and I now use a walker and no longer have pain.
18) I am a polio survivor with diagnosed post polio syndrome, although I work full time in spite of it and don't appear disabled. I believe that because PPS is a neuromuscular disease that many drugs affect me adversely and I believe there is literature to prove this. I have a very high cholesterol level and at different physician's insistence I have tried a variety of cholesterol lowering medications. All have left me so fatigued I cannot function and I absolutely will not accept that. Four years ago a new family physician emphasized that I must take some sort of medication and so I agreed to take Lipitor.
After several months I quit. I had severe fatigue and muscle aches. However because of PPS I can have these symptoms when I am overworked so I soldiered on and continued taking Lipitor as my doctor insisted. I finally gave up and discontinued Lipitor. Within a week my fatigue greatly decreased and after 3-4 weeks my muscle aches disappeared. I did not return to my physician until several months later, at which time he threw up his hands in despair, so I agreed to try again. Of course I thought maybe my high stress job had caused the symptoms. But within 1 week of restarting Lipitor the muscle aches and fatigue returned. So no more. I absolutely refuse to take any sort of cholesterol lowering medication. I will die from the side effects before anything else. Incidentally I am also an RN.
Duane Graveline MD MPH
Former USAF Flight Surgeon
Former NASA Astronaut
Retired Family Doctor