ALS-like symptoms from Vytorin

A message board to discuss personal experiences of Vytorin and its side effects.

ALS-like symptoms from Vytorin

Postby carbuff » Thu Jan 12, 2006 2:55 pm

Posted: Thu Jan 12, 2006 2:42 pm Post subject: ALS-like symptoms from Vytorin


My mom has been on cholesterol medication for almost 15 years. She is only 48 years old. The medicine she has been on ranged from all different types of statin drugs. The last being Zocor and then a switch to Vytorin. She has always suffered from stomach problems and then the last couple years she has noticed muscle weakening in her hands and cramping. After vigorously exercising regularly, the problems seemd to get worse. There is not much muscle left in her hands and she finds that her arms are very weak. Her muscles are easily tired and after a recent EMG she has noticed twitching throughout her body. She also seems to have slurring in her speach and difficulty writing.

Basically the doctors are leaning towards ALS. I just have a hard time believing that this is the answer. Could it be possible that these really are side effects from the Statin Drugs?? Suppossedly her EMG results were not great and the last doctor she saw seemed to think it was ALS.

She has been off the statin drugs for 2 months now. Her symptoms are not any worse...they have pretty much stayed the same.

If ANYONE has, or knows of someone with similar symptoms, PLEASE contact me.

I am so worried about her, but refuse to believe that she has a life threatening disease. I'm just trying to get my mom back.

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Postby Tulip » Fri Jan 13, 2006 2:40 am

Dear Carbuff,

Contact Doug Peterson. Doug was diagnosed with ALS, until his neurologist concluded that only the years of Lipitor could be the cause of his severe disability. As far as I know, Doug is recovering very slowly.

His email adress: (See also the article from the Tahoe World, below).

All the best with your mom!



At first glance, Tahoe City resident Doug Peterson looks like he is recovering from a stroke.

His speech is slurred, he has difficulty walking in a straight line, and he can't sign his own name. By afternoon, he is so fatigued he has to sit down for the rest of the day. When asked his age, Peterson says he is 52. His wife Karla, standing nearby, corrects him. He is 53.

Doug has never had a heart attack, and until the onset of the symptoms almost three years ago, was an active skier, biker and scuba diver. Now he is limited to walks on the treadmill. Doug traces his problems to a drug he started taking almost three years before his health began deteriorating - Lipitor. Two other Tahoe City locals have also experienced negative side effects from taking Lipitor or other statins, the name for a family of cholesterol-fighting pills.

While there is no concrete evidence linking Doug's health problems to Lipitor, after doing years of research, meeting with doctors and talking to other statin sufferers all over the world online, he and Karla are convinced of the connection. Pfizer, the maker of Lipitor, claims the drug is effective in lowering cholesterol and has minor side-effects. But as Doug and others would ask, is it worth it?


Doug, who has hereditary high cholesterol, was first prescribed Mevacor, a statin made by Merck, in 1998. Six months later, his doctor had him switch to Lipitor, which comes in higher doses, and upped his dosage from 10 to 20 mg. His cholesterol dropped from 285 to a low of 160.

"The doctor was very pleased," said Doug, "but meanwhile the symptoms started."

In the fall of 2000, Doug began having restless sleep patterns. His twitching and flying arms got so bad that Karla had to sleep in another room. One time, Doug even fell out of bed. The couple didn't think anything was seriously wrong until a few months later when Doug started slurring his words. This was followed by a loss of balance and the beginning of what Doug calls the "statin shuffle" - a slow, wobbly walk across a room. Next to slide was Doug's fine motor skills. It took him five minutes to write four words, much of which was illegible. Finally, he tired easily and his cognitive memory processing diminished. He had trouble following books with complex plots.

Confounded by Doug's illness, over the next two years the Petersons traveled all over California meeting with neurologists, internists and acupuncturists. Doug had MRIs, brain scans and neurofeedback tests done. Last February, Doug's doctor suggested he go off Lipitor to see if the drug was causing his health problems. After three weeks, the symptoms persisted, so the doctor put Doug back on the pill. Since Doug wasn't exhibiting the most common side effect, muscle cramps, and his liver function tests came back normal, the physician was doublly sure that Lipitor was not to blame.

Finally, last spring, a doctor in Pasadena suggested Lipitor could be the culprit. Doug went off the drug in May, and since then his symptoms have stopped their downward spiral and his health has slowly started to improve. According to Karla, his mind is sharper, his balance is better and his speech is more clear in the mornings, before he gets tired. But he still has a long way to go.

"Before, I was a good father and family person," said Doug, who has two children with Karla. "At this point, I can't do that much."

A former Navy diver and owner of Sierra Tahoe Computers, a repair and service business, Doug has had to cut down his work schedule because of his fatigue and loss of hand coordination. He is considering going on disability, but Karla remains optimistic.

"We are hoping he is going to get better. That's our number one goal," she said. "Anger is a waste of energy at this point. We are trying to recover and get the word out."


Since Parke-Davis (later acquired by Pfizer) developed Lipitor in 1997, it has become the number one prescribed cholesterol-lowering drug in the United States, with more than 18 million Americans having been prescribed the drug. New York City-based Pfizer, the world's largest pharmaceutical company, derives a quarter of its $32 billion in annual sales from Lipitor, according to an article in SmartMoney. With sales expect to top $10 billion this year, Lipitor is poised to become the largest-selling pharmaceutical in history, surpassing Pfizer's other wonder drug, Viagra.

Lipitor is proven to lower total cholesterol by 29 to 45 percent. As with any prescription, it comes with a list of possible side effects, such as muscle pain or weakness and liver dysfunction. Pfizer's Web site states, "The most commonly reported side effects are gas, constipation, stomach pain and indigestion. They are usually mild and tend to go away." In a nine-month study of 2,502 patients, Pfizer found that more serious side effects, such as facial paralysis, colon inflammation and gallbladder pain, occurred in less than 2 percent of those treated.

Pfizer was unable to commment on reported adverse side effects in time for the Tahoe World's deadline.

The problem, say the Petersons, is that Pfizer has not conducted any long-term studies. Doug's health issues didn't start for two and a half years after he started taking Lipitor. Similarly, Tahoe City psychologist John Altrocchi, 75, was on Mevacor for around three years when he started to develop calf pain that became so severe he could hardly walk. He also experienced a case of temporary memory loss called transient global amnesia (TGA), which has been linked with statins. A day after watching the 1998 Super Bowl game, Altrocchi had no memory of the event.

"There's no way you could prove that Mevacor was responsible for the TGA, but it's very possible," said Altrocchi, who stopped taking the drug about three years ago and convinced his brother, a retired neurologist, to go off Lipitor. "Especially for older men, I think it's wise to get off statins right away. There is very little evidence they do much good."

While most symptoms seem to start after a few years, Ed Ontiveros of Homewood began having physical problems within 30 days of taking Lipitor. After experiencing muscle aches and weakness for a few days, the 75-year old fell in the bathroom and didn't have the strength to get up. Since going off the drug, he's had no problems.

"It [reduced cholesterol] is not worth it with the side effects," said Ontiveros. "You may not live as long, but you sure don't want to die earlier."

Doctors are quick to prescribe Lipitor, says Karla, because they perceive it as a magic bullet in the battle against cardiovascular disease, the leading cause of death for Americans, and it's easier than prescribing a long-term regime of healthy diet and exercise. But the evidence that high cholesterol leads to heart disease is not conclusive, said Altrocchi, and there is even speculation that cholesterol provides protection for the brain and spine.


The Petersons say Pfizer is too powerful to take on alone, but would consider joining a class-action lawsuit against the company. However, lawyers have told them a lawsuit is only possible if Lipitor gets recalled by the Food and Drug Administration. (Another statin, Baycol, was recalled by Bayor in 2001 after 31 people died of kidney failure while on the drug.) The Petersons filled out a complaint on the FDA Web page and encourage other Lipitor sufferers to do the same.

Frustrated by doctors who doubt the connection between Lipitor and health problems, the Petersons are awaiting the results of a study being conducted by Dr. Beatrice Golomb, a neurologist at the University of California-San Diego, on the effects of statin drugs. As reported by the Wall Street Journal this week, Golomb found that 15 percent of statin patients developed some cognitive side effects. In the meantime, the couple is focusing on Doug's recovery and staying positive.

"At this point, I consider myself lucky I'm not in a wheelchair," said Doug, who is currently in phsyical therapy. "There are no guarantees in life. Your birth certificate doesn't come with a warranty."

For more information, contact Doug Peterson at or visit Drug Information Technologies at
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Thanks Tulip

Postby carbuff » Fri Jan 13, 2006 10:30 am

Thank you for Doug's email. Is he a friend of yours? Do you think that he will respond?

I have emailed him before last week with no response. Any other suggestions? Do you suffer from the side effects of statin drugs yourself?
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Postby Tulip » Fri Jan 13, 2006 12:05 pm

Hi Carbuff,

No, I'm a Dutch science writer and not a statin victim myself. I communicated with Doug in 2004, when I had to defense myself in our Press Council (after writing about statin induced misery and being accused for manslaughter, no kidding). The last thing I heared from Doug was that his neurologist told him his 'ALS' wasn't ALS, but a mysterious, probably statin induced syndrome. I don't like it that you got no response (he normally would reply). I sincerely hope the poor guy is more or less allright. Maybe Doc Graveline knows more?

Best wishes,

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Location: The Netherlands

Postby ironic » Fri Jan 13, 2006 5:12 pm

This is the page on the site on this topic with reader experiences:
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Postby carbuff » Mon Jan 30, 2006 3:09 pm

I ended up getting in contact with Doug Peterson. The infomation he gave me was not that hopeful. His symptoms have really showed no signs of improvement. This was upsetting, but at least he was honest. However, I'd rather my mom be suffering from the side effects from statins, than have ALS.

If anyone has any other information, I would appreciate it so much. Has anyone shown this similar symptoms I've talked about above?

My mother's condition is the same. Although, we are hopeful because she hasn't gotten any worse.

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Postby eml256 » Wed Apr 12, 2006 12:57 pm

hello, I too have heard of ALS symptoms from statins. I corresponded with a lady from boston who was originally given the diagnosis of ALS, which was "re-confirmed" by 2 other neurologists. She continued to search for a neurologist who would perform muscle testing, and found Dr. Thomas Kwiatkowski at the Mass General Hosp in Boston--he is(or was) in the Neurology dept which is headed by Dr. Robert Brown, a world renowned clinical neurologist and researcher. perhaps if you called and spoke with either of these men they would be willing to help--if you can get through the wall of employees who feel it their given mission to protect the physicians from anyone who needs them (sorry--my cynicism is showing). There are also "archives" from a feature on the MDA (muscular dystrophy)web site under the heading of motor neuron disease called "ask the experts"--in which individuals could write in with a question and one of the physicians associated with the site answered whatever questions had been chosen to be published that month. one of the questions:
05/04) [4097] STATINS — COQ10
Are you aware of any research going on connecting statins and amyotrophic lateral sclerosis (ALS)? My husband's doctor mentioned current research that seems hopeful, using CoQ10 in large doses, as well as a possible connection between free radicals and ALS. A recent article on CoQ10 indicated that taking statin drugs can lower the amount of CoQ10 in the body. If CoQ10 is useful in removing free radicals and statins lower CoQ10, is it oversimplification to connect the drug and ALS, if not as a cause, but for making the disease worse? My husband's condition has been limited to muscle weakness and atrophy of one hand that began, coincidentally, when his doctor added 1200 mg of Niaspan to his Lipitor regimen. In almost two years the problem has not spread beyond the right hand.

REPLY from MDA: Hiroshi Mitsumoto, M.D., Director, The Eleanor and Lou Gehrig MDA/ALS Center, New York, N.Y.

The relationship between CoQ10 and statin is an interesting one and we have to pay attention to it. I have to admit that I did not know anything about such a chemical interaction between them. CoQ10 is lipid soluble, which may have something to do with this particular observation.

We are about to start a large multicenter study with megadoses CoQ10 in patients with ALS and we will certainly investigate this issue. I appreciate your bringing up this particular point.

you will notice if you access this site that of the last 16 questions published, 4 of them consituting 25%, ask if the statin being taken is related to their ALS. Interestingly enough, I wrote to all the physicians who responded to these specific questions in August 04--no one answered my query about the incredible "coincidence"--but the feature never resumed. It was abandoned. no explanation other than the web site was "revamped" could be coincidental--same as those 4 questions could be coincidental. but one would think it should at least raise a question in the physicians' minds....
You could also email Dr. Beatrice Golomb who is a neurologist/researcher at UCSD currently amassing self reported side effects of statins to perform a meta analysis of the information and publish the results. Last I corresponded with her, she mentioned ALS symptoms and diagnoses ....her email address is :

PLEASE take the time to email her--she will respond and then have one of her researchers contact you.
the reason i am interested in neurodegenerative diseases and statins--i am certain Lipitor is associated with my husband's diagnosis of Parkinson's
Best of luck to you, madelyn
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Postby carbuff » Wed Apr 12, 2006 1:05 pm


Thanks so much for the info. I have been in contact with Dr. Golomb. I had emailed her before and after your post I decided to email her again. I ended up getting a phone call from her last night. She is such an amazing lady and was so kind to us.

Sounds like she has a pretty extensive study going on right now. I'm very interested in getting my mother to make the trip out to San Diego for some tests. My mom is scheduled to go to U of M hospital at the end of this month, but I don't think she is going to to. She is supossed to have another EMG test, but the last one she had made her severly twitch for two months. It was to the point where she couldn't even sleep. Dr. Golomb brought up a good point. She said how is this really going to help her and how can she benefit from another EMG? I agreed with this. Have you ever heard of this type of reaction to an EMG? What are your husband's symptoms?

Take Care,

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neurodegenerative diseases and statins

Postby eml256 » Thu Apr 13, 2006 8:36 am

Hi Jamie, I am really unfamiliar with ALS and the tests used to diagnosis the disease. my husband was diagnosed wtih Parkinson's after 4+ yrs on Lipitor 10 mgm/day. His symptoms are hand tremor and slowness or bradykinesia. fortunately, he has not had much progression of the disease since he was diagnosed in aug 04. he does take a multitude of supplements and vitamins, including 1600 mgm coenzyme q10 (there is one published study showing the efficacy of this dose of coq10 with early onset parkinson's disease--there is a multi center study looking at dosages up to 3000 mgm/day at present.)
best of luck to you and your mother. madelyn
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Over-the-counter possibilities

Postby Darrell » Sat Apr 22, 2006 12:58 pm

Carbuff, it's not clear to me whether your mom has tried Q10 yet. There was at a point over a year ago that Zocor had me researching things like ALS and Parkinson's. I had weakness and twitching and fatigue. Stopping the Zocor stopped the decline. Taking Q10 provided some improvement. Very recently I started taking L-Carnitine in addition to Q10 and that has brought me back to near-normal for hours at a stretch. Neither Q10 nor L-Carnitine requires a prescription, and you can buy them at drug stores, discount department stores, and grocery stores. Spacedoc offers Q10 advice. As for the L-Carnitine, I can tell you that I felt better after the very first 250 mg dose, but the effect only lasted for three or four hours. I have worked up to Q10 at typically 200 mg, three times daily and L-Carnitine at typically 500 mg, four times daily. I feel better now than I did at any time in 2005. No guarantees, but neither supplement has much side effect risk at those doses, they're both normally present in your body anyway, and it's a relatively cheap and simple thing to try. I see that Wal-Mart is selling combined 100 mg Q10 / 100 mg L-Carnitine capsules -- maybe that would be convenient for you.
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