The People's Perspective on Medicine

Cholesterol-Lowering Drugs and Lou Gehrig’s Disease

Q. My husband started on lovastatin for high cholesterol and soon began to notice weakness in his right arm. This weakness progressed so he saw his doctor, thinking he had a pinched nerve. He was referred to a neurologist who gave him a diagnosis of “possible ALS.”

On his 60th birthday a second opinion confirmed the diagnosis of ALS. Since that time, my husband has progressed from weakness in his right arm to complete loss of function in his arms, very weak leg muscles and difficulty breathing. The doctors are now encouraging us to enter him into hospice care. This took only 10 months. We are still in a state of shock!

It really bothers me that his cholesterol was not that high–239. Since then, we have heard that niacin and diet might have brought it down without a statin drug. The ALS specialist has told our daughter that she should never, ever take a statin.

A. Over the last two years our Web site has received more than 100 reports of ALS (Lou Gehrig’s disease, which causes muscle paralysis) in people taking statin-type cholesterol-lowering medicine.

The FDA also got a signal that ALS might be linked to statins, but when the agency analyzed data from clinical trials it concluded that there was no association with drugs like Lipitor, Crestor and Zocor (Pharmacoepidemiology and Drug Safety, Nov., 2008).

A new report in the journal Drug Safety (Aug. 8, 2009) suggests a connection in susceptible individuals. People who develop serious statin side effects such as memory problems or muscle aches may be at increased risk.

We discuss pros and cons of statin medications along with many other ways to lower cholesterol in our Guide to Cholesterol Control & Heart Health.

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About the Author
Terry Graedon, PhD, is a medical anthropologist and co-host of The People’s Pharmacy radio show, co-author of The People’s Pharmacy syndicated newspaper columns and numerous books, and co-founder of The People’s Pharmacy website. Terry taught in the Duke University School of Nursing and was an adjunct assistant professor in the Department of Anthropology. She is a Fellow of the Society of Applied Anthropology. Terry is one of the country's leading authorities on the science behind folk remedies. .
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My husband was recently diagnosed with ALS, He did too took simvastatin and notice muscle cramps and muscle wasting on upper arm. It took months for the doctors to diagnose and my husband is scheduled to undergo muscle biopsy and was prescribed a drug called reletic.

I don’t care what the FDA says, I know statin drugs gave my mother ALS. She was diagnosed at 80 years old. Everyone was surprised that at that late age she would be diagnosed with it but of course no one questioned it. There was no ALS in our background and my mother had been exceptionally healthy all her life.
There is some connection I know it. We were always told “Oh no it couldn’t be from the statin drug” but if they don’t know what causes ALS, how do they know that statin drugs DON’T cause it? My Mom lost her battle with ALS after two sad horrible years for my family. I have heard the drug companies make more money from Lipitor than any other drug – That’s quite an incentive to keep selling it.

My husband started taking statins late 1999. Shortly after taking them he developed ALS. He died 2004. We tried to track what in his life could have triggered this. No one told us that it could have been the statin drugs.

If Niacin is recommended for intake to lower cholesterol, then what is the dosage? Does the dosage have to adjust for body weight?

I agree I was put on Lipitor and a few months I stated to have pain in my legs and my jaw, my teeth ached ..told the doctor he put me on was just as bad my legs pained me every day and I would wake up with charlie horses and toes becoming locked right out of a sound sleep many nights every week.
Now I am on 10mg and not much better, I feel it’s all from the cholesterol medication and I am looking into taking something natural and hope it works as I have no use for these statins any more, I have gone to several doctors as
well, with no luck.

I HAD been on statins for over ten years. Approximately 2 years ago I began losing weight. My skin felt dry and rough and legs hurt and became weak. After several test my doctor said I have a high enzyme count. I was sent to a rheumatoligist. I was getting weaker and walking was getting to be difficult. I was told that there was nothing they can do now. Now I can not walk without a walker. My arms and legs hurt and are weak.

Along with the statin I was prescribed CQ-10 which relieved the pain and muscle weakness. It was thought I could reduce the dosage from 150 mg to 100mg, but the pain returned. After I was able to reduce the statin I was also able to reduce the CQ-10. What was explained to me, was that the statin takes that compound out of the body, hence the need to replace it, and in the proper dose!

I know, I KNOW statin drugs have led to a serious decline in my 73 year-old mother’s health but she refuses to listen. Over the course of 10 years, she went from a self-sufficient woman to not being able to walk or stand, complains of constant pain in feet, legs and back. She can no longer garden or cook, things she always loved. This has surely decreased the quality and likely quantity of her life. I don’t know that taking a chance on what might happen if you don’t take them isn’t the better option. If faced with that in the future, I know my answer will be a resounding “NO”

I was advised by my Dr to take Lipitor for elevated cholesterol 5 years ago. After
a few months I developed low back pain followed by severe pain on my right leg. All
Drs I consulted blamed a spinal disc as the culprit for my symptoms. A few months
later I was told that in order to obtain optimal control of the elevated cholesterol
I would have to increase the dose of Lipitor to 20mgms/day.
After 6 weeks on that dose the pain became worse and I was having problem to get up from a chair because of the pain in my back and legs so I decided to stop the Lipitor. The symptoms began to improve within 3 weeks and now 6 months later I feel 80% of the side effects have resolved.
I think that statins are very dangerous medications despite what the FDA and Drs think.

I am a registered nurse for many years. My husband has been on Lipitor for a few years and I noticed that he was having some memory problems. His mother just died this past fall of Alzheimer’s dx.
I was very concerned about what might have been causing the memory issue. I asked him to stop the Lipitor and so far I think that he is better. He hasn’t told his doctor yet. I do agree with you. I also think that elevated cholesterol is over-hyped.
My grandmothers lived to be 99 years and 78 years. They are still learning about what causes heart disease and atherosclerosis such as inflammation. I know that you have also read the literature on this. I have never worked in a doctor’s office but I am well aware of the bene’s that they give the offices.
At one doctor’s office here in Savannah, the reps give them daily catered lunch and it is a large office. When I worked in Huntsville, Al in the 1990’s, I knew a doctor who went on a Caribbean trip with his family for the weekend thanks to a drug company. I don’t know how you feel about the health care reform, but from the very beginning of this President’s health care platform for election, I thought, no way would the Health Insurance companies allow a universal option or even a public option. Unfortunately, I think I was correct. God bless you and your family.

Shortly after beginning a statin drug, I developed drooping eyelids, and ascending numbness in my legs which eventually extended to my waist. Also during this time I developed mild incontinence. After stopping the statins these symptoms decreased and finally subsided. My brother developed myasthenia gravis while on a statin drug.
At first, my doctor dismissed my complaints and insisted that I needed the statins to lower my cholesterol. I was sent to a neurologist who also dismissed my symptoms and actually was quite insulting to me.
I have developed a healthy disregard for drug company propaganda and have resolved not to take any newly developed drugs because they are marketed without sufficient data about side effects and prescribed without healthy skepticism by physicians who provide them without considering the impact on their individual patients.

I am a retired registered nurse. I took Lipitor for one year, didn’t like the way it made me feel, so against doctor’s orders, I stopped taking it. But it left me with neuropathy (numbness) of my toes. This was 7 years ago. The neuropathy now has advanced to the stage that my whole foot (both feet) now have slight neuropathy. I KNOW that lipitor caused this! But my doctor doesn’t agree with me.
I have worked in enough doctor’s offices to know how the pharmaceutical companies work. They send drug representatives to the doctor’s office, and talk the doctor into prescribing THEIR drugs, to the patients. Over and over, I saw this happen. There is a web site where many people have complained of the bad side effects from taking statin drugs, and they report memory loss, neuropathy, muscle weakness and what amazed me was that every single one of them reported that their doctors are not “listening” to them.
I understand there was even a study done at Stanford Univ. about the bad side effects of statin drugs. I would not touch a statin drug ever again. Sad to say, there is nothing that can be done to help the neuropathy and I have to live with it. I think this is an over-rated drug, and I think the concern over elevated cholesterol is also over-rated. My mother lived to be 90, never heard of cholesterol, and to end this, I am disappointed with the medical profession and the pharmaceutical companies at what they are exposing the American public to. I think MONEY is behind all of it!!

If there is a possible causal link between ALS and statin drugs, could the same link be made with Parkinson’s? My husband was put on a statin drug in the mid 1990’s and has been on different ones ever since. Even when his CPK levels were too high, he was taken off the statin drug temporarily to lower his CPKs. As soon as his cholesterol started to climb, he was put back on a statin (now it’s Zocor).
He has suffered with incredible pain in his legs and feet for no less than seven years and this seems to be similar to what others who are sensitive to statin drugs experience. He started with some hand tremors and unsteady balance. In addition, his memory was not as good as it was. However, most of his Parkinson’s symptoms appeared until after he started the Sinemet. Is it possible that he was misdiagnosed? Any advice or suggestions?
I know that Parkinson’s Disease is on the rise worldwide. Could statins be a culprit?
Thank you–Louise

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