The People's Perspective on Medicine

Did Cholesterol Drug Trigger ALS?

Q. My wife took Lipitor to lower her cholesterol. When her legs began to hurt, she quit taking it. She still couldn’t ride the mower, one of her pleasures.
She was diagnosed with ALS and passed away less than a year later. I lost the most precious person in my life after 31 years of marriage.
I am convinced that the drug she took led to her ALS. I lost my job and our home because I was taking care of her full time before she died. I am concerned that others may not realize some of these statin drugs could be deadly.

A. We are so sorry to learn of your loss. The possible connection between statin cholesterol-lowering drugs and ALS (Lou Gehrig’s disease) is extremely controversial (Drug Safety, Aug. 2009). Although the FDA received reports of statin-associated ALS in its Adverse Event Reporting System, the agency determined that clinical trials of statin drugs did not show an excess of ALS cases (Pharmacoepidemiology and Drug Safety, Nov. 2008).
The People’s Pharmacy has become a clearing house for hundreds of stories about ALS and statins. This is not scientific, but some of these case reports are incredibly compelling. Here is a link to hundreds of posts. You will also find a link to an interview with Ralph Edwards, MD, Director of the World Health Organization’s drug-monitoring center in Uppsala, Sweden about a link between statins and ALS-like syndrome.
Physicians are becoming more cautious about prescribing these medications. Steven Nissen, MD, chair of cardiovascular medicine at the Cleveland Clinic, told us these drugs should be reserved for patients with heart disease or those at high risk because of diabetes, hypertension or other conditions.
You can listen to our one-hour interview (#851 at PeoplesPharmacy.com) with Dr. Nissen, Dr. Beatrice Golomb of the University of California, San Diego and Lisa Gill of Consumer Reports on the pros and cons of statins. We discuss ways other than statins to reduce the risk of heart disease 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 father took a Statin for 2 years before developing diabetes. No one in our family had that yet. My sister developed diabetes a little over 2 years after taking Lipitor. After 3 years of Lipitor I developed diabetes. After complaining of muscle weakness to my Doctor, he said it didn’t matter, I have to take Lipitor to protect my heart. I was recently diagnosed with ALS. After 2 years taking Crestor, my brothers doctor told him his sugar is high and needs to be watched. When he told me that, I told him to get off of Crestor because statins can raise blood glucose levels. He got off of Crestor and now his sugar levels are normal and he doesn’t have diabetes. No one in my family takes a Statin anymore.

My dad took Lipitor for two years. He was a hiker and tennis player and loved to be active. His legs started feeling like dead weights and he had to stop all his physical activity. After two years he stopped taking Lipitor (against his doctor’s advice) and his legs felt better immediately. Unfortunately, he developed ALS and passed away just a few years later.

My husband now takes Lipitor and started complaining about his legs hurting. I have harped on him for years that the stuff is evil but he won’t listen. Now he has cut his Lipitor in half. I think he should get off of it but his doctor doesn’t agree.

His Dr. is more than likely getting his bonuses from prescribing these, that’s pretty standard practice.

My husband of almost 55 years passed away Dec. 1 2014 from ALS he took statins for 12 years. I am convinced that taking the statins caused the ALS. This is a horrible way for someone to die and to watch a love one die by degrees. The Drs. will not tell you the dangers of statins. I quite taking them when my husband stopped taking them but it was too late for him and he lived 17 months from the date he was told he had ALS.

My father also was prescribed cholesterol medication and we saw ALS signs after that (change of voice, slow speech, etc), though back then we had no idea what it was. After two years he was diagnosed with ALS and passed away within a year, three months ago in 2014.

I am so sorry to hear of all of these terrible stories. And am completely ashamed of myself for ever pushing these drugs (I was a Critical Care RN) I have been disabled 11 years now due to the effects of statins. I was on Lipitor for 3.5 years when I fell terribly ill, resulting in my disability. There is a plethora of information out there linking Statin use to ALS. What is sad is most prescribers (Dr’s, NP’s and PA’)s are completely unaware of these and most other horribly devastating effects of statins. It seems the ONLY thing they know about is Muscle Pain. I choose to not see a doctor any longer unless its an emergency. I feel so betrayed by what we call “health care” in this country. Dr Golomb is one of the very few doctors I know of that actually is well aware of this correlation. God be with you all!!

All of this hits so close to home. My husband was on several statins and then Crestor with Zetia added. He developed type 2 diabetes so was put on metformin. He began losing weight and couldn’t stop the downward spiral. We finally got the doctor to take him off metformin and the weight loss stopped for a while. Meanwhile he started experiencing weakness in his shoulder muscles to the point where he wasn’t able to hang up his sport coat. He started becoming short of breath. Doctor stopped the statins.
Finally went to neurologist because of the weakness and muscle twitching. 1st doctor said he didn’t have ALS. 2nd doctor said no ALS but his gut feeling was that he would. 3rd doctor said yes he does have ALS. He went from walking several miles a day to not being able to walk but a few steps due to weakness in his legs and shortness of breath. After a few months he had to go on a bipap 24/7. May of 2012 he had to have a g-tube inserted for feeding since he was no longer comfortable swallowing. Jan of 2013 he had to have a tracheostomy and put on a ventilator.
He’s able to be at home on the vent and is doing well. We started a protocol developed by a doctor in Florida for his daughter who was diagnosed with ALS. in her 20’s. It’s basically geared around nourishing the motor neurons and nerve health. I have no doubt it was the statins that triggered the ALS type symptoms. Another supplement he is on is coconut oil. 4 TBSP daily recommended by an integrative medicine doctor in Orlando. He was also diagnosed with Lyme disease with a co-infection called Babesiosis that’s passed along by the tick. He had lost a lot of weight between 2011 and 2012 so we put him on a continuous feed with a ” Kangaroo pump” so he’s fed through his g-tube 24/7. Water and glucerna 1.5.
He gained weight and that’s made a big difference. Up to 165 from 135. Before he got sick he weighed 205. It seems that you can’t take the lubrication provided by cholesterol to the brain without doing damage. As for Rilutek. He tried it but very expensive and when it only gives you maybe an extra month he decided not to take it.
I have no doubt that statins caused the diabetes and triggers neuro muscular problems. I do know also that Lyme disease can cause all of the same symptoms as ALS and more. I can only tell you what I’ve done to try to help my husband of 54 years and that is to build up his immune system and keep him as healthy as possible. The protocol we use can be found on “Winning the fight”.org. My husband went from being a very active, healthy 70+ to being bed ridden.
Most of the doctors wouldn’t recommend being on a home ventilator but I can tell you it’s worth it. He’s able to text his grandkids and see them grow up and it buys time. I’m grateful for every day with him. For those that haven’t seen the stem-cell trial coming out of Israel to Mass. General and U. Mass in Boston. by “Brainstorm”. Very Promising. My heart goes out to those who have lost loved ones to als. and pray for a study that will actually show that statins DO cause this problem. Fighting big Pharma!

My mother was also prescribed cholesterol lowering medication in 2009 and was diagnosed in 2013. She passed away 10 months later. Further study should be completed and notification of possible side effects should be mandatory.

My mother was prescribed a statin drug after having a carotid artety blockage. She took statins for at least five years. In 2007, she was diagnosed with ALS by a specialist at an ALS clinic . She passed away five months later. No one in her family has had this disease. It seems that there are many people with ALS who took statins. Very suspicious if you ask me.

It is not that cholesterol is a cause of ALS, it is that statins may be. My husband was the only one in his family to develop this disease, the only one to take statins. Whether or not, he had a malfunctioning gene, I now believe the statin triggered his ALS. Helen

The paternal side of my family has a history of ALS, 7 or 8 members have passed from it, the latest my sister in 2008, My father had it and passed in 1973 at the age of 66, He had had it for several years as did my sister. I know neither of them were on cholesterol drugs. I have read that some deaths being attributed to AlS were not actually that at all. I am very skeptical about whether Cholesterol is a cause of this horrific disease.

I am 87 years old female. I was put on statins about 30 years ago. About 5 years ago I developed pains in my ankle area and asked the doctor if I had Peripheral Artery Neuropathy (PAD). He scoffed and said it is not PAD. But the pain got worse and finally about 2 years ago he admitted it was PAD, and then information from the FDA came out that long term useage of statins are the cause of PAD so I stopped taking statins and have not taken them for about a year.
The doctor insists that I continue the statins but, in the meantime I am now Pre-diabetic and have been watching my carbo intake and found that it has also lowered my cholesteral levels. I have good LDL numbers in the 50 plus range. I weighed about 128 lbs, but am now 109 lbs so I have lost weight and my AC1 went down from 6 to 5.4.
You might not publish this but it’s OK at least I’ve gotten it off my chest.

My son-in-law took 80mg. Symvastatin. After a few weeks he had terrible pains in his legs and discontinued the drug. The pain did not go away and my daughter insisted he go to a neurologist because it had affected his walk. After some time he was diagnosed with MSA, multiple systems atrophy. It seems to be disease akin to ALS. He is now on disability, he cannot walk without the aid of a walker and is on a slippery downhill slope. His life expectancy is 5 to 7 years. He insists he was fine until the doctor put him on the drug.

This is just my very humble personal opinion – and I do mean it is my Personal opinion, BUT after taking 2 statins and having untold problems with both of them (one doctor acknowledged the problem the other did not) I never cease to be amazed at the problems this drug can cause.
What is is going to take to get this stuff regulated better? Less money in someone’s pocket – ya think?

Did this hit home!! My husband passed away from ALS in 1990. More than 20 years later we have made no progress in treating this condition. He came from a family, as I do, prone to high cholesterol and in the late 80s was placed on Mevacor. At the same time we made drastic changes in lifestyle. His cholesterol responded, except for the HDL, (he was physically active) and we felt safe from the threat of another heart attack. He was diagnosed with ALS in 1989, gone less than a year later, at the age of 54.
As to myself: I was on lipitor and we could not understand why my diabetic neuropathy continued to advance in spite of good control. I stopped lipitor on my own almost two years ago and saw an immediate decrease in my insulin usage. As to the neurological damage – well, I have since been diagnosed with fibromyalgia.
Very few people had problems with rezulin, a good drug for me, yet that was removed from the market. Many more have statin related problems, yet the drugs continue to be amongst the most popular prescribed by doctors. Could the difference lie in who owns the drugs?
Of course, the American public does not count.

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