The People's Perspective on Medicine

Are Cholesterol Drugs Linked to Lou Gehrig’s Disease?

Q. I have been fascinated with letters from people reporting that Lipitor weakened their muscles. I believe Lipitor triggered my ALS. Until last month, my doctors wouldn’t listen to me, but then a report from the World Health Organization (WHO) showed a link. Please warn others.

A. The article authored by WHO researchers was published in Drug Safety (June 2007). It points out that an unexpectedly high number of people developed Lou Gehrig’s disease while on a statin-type cholesterol-lowering drug. Lou Gehrig’s disease is also known as amyotrophic lateral sclerosis, or ALS. There is no cure for this degenerative disease of muscles and nerves.

The connection between ALS and statins is controversial. The FDA is not convinced there is a link.
The WHO report advises doctors to discontinue statin therapy if patients develop “serious neuromuscular disease such as the ALS-like syndrome.” People who believe they have experienced such an effect may report it to us at www.peoplespharmacy.com. We will forward such cases to researchers and the FDA for further review.

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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 Statins for several years. He was diagnosed ALS in 2012 and died the same year.

I have been on Statin drug generic Crestor for 16 years. Yes, I to have all the side affects, related from taken this drug. muscle weakness, hard to swallow, my eye sight is more blurry than ever, reflex difficult, twitching, memory loss, slurred speech, neck pain, charlie horse in my leg as I awake, trouble sleeping, etc. A friend of mine husband and wife are in the medical field and they refuse to take Statin drug for those exact reasons. I think I am going to stop after this last presentation.

My cholesterol level has been over 300 since I was 40. I am now 73 years old. Three different doctors have tried to put me on Statins. I took Mevacor, Lipitor and later Setia for only a few weeks each and my joint and muscle pain was horrific. I stopped taking Statins forever. My cholesterol is still over 300. I am a healthy senior. Cholesterol is not the cause of heart disease. Educate yourself and read about Ancel Keys and how the medical community has been wrong for many years in blaming high cholesterol for heart issues.

Thank you Carol in Texas. My Cholesterol is 252 but I’m thinking, maybe my body knows what it needs and I don’t like anything interfering with my liver. I’m glad to hear you are doing so well off the medications. You give me hope!

I was on Lipitor for a year and developed pain in my muscles and joints. As Lipitor was the only medication I was taking, I stopped and the pain went away. When I told my doctor that I stopped because of the pain I was experiencing, she told me that the medication wasn’t causing the pain, but that I was probably getting arthritis! I changed doctors. My cholesterol was 200 at the time and I heard about Cholest-Off, an all-natural gel pill made of plant sterols. After taking Cholest-Off, my cholesterol dropped to 170 and I have continued taking it. My new doctor approves, since it helps me and I have not had problems with my cholesterol since.

I was on Lipitor for about 8 years and just recently stopped taking it in April. The reason I stopped was due to Left leg weakness which has gotten worse. I have had swallowing problems for the last 7 years and contributed that to reflux issues and hiatal hernia. I have always had droopy eyelids but in the last 4 years my vision has gotten worse. I looked at all these issues as independent ones until my weakness in my leg.
I have ulcerative colitis which is an auto-immune disease and PSC which is a disease of the livers bile ducts. I was leaning toward myasthinia gravis (another auto-immune disease) but my suspicion is that Lipitor had some consequence on my physical problems. I will get a barium swallow tomorrow and a visit with a neurologist soon.

My father died of ALS and the only medication he was on was Lipitor !
He never had any other health problem at all then suddenly ALS !
Makes me wonder!

My mom took Liptor for a year, muscle aches and pains and she went off. She was dignosed with ALS in September 2009 and passes away February 2010…she was 73 years old.

Dear Nancy:
My Dr. recently wanted me to start on a statin drug. I have not started the med’s yet and I doubt that i will. My friends used Lethecin to lower theirs and I am trying that.
Your body is your own, Dr. has no right to get mad and think they are god just because they went to med school. Sure they know some things we do not. But many do not know the natural way. There is always more for all of us to learn. Take care and have courage to do what is good for you. Check around for another Dr.
Melinda

Not enough information in any of these postings to draw conclusions but they are indeed alarming. I am concerned that folks might make rash decisions without medical advice (and if you don’t believe or like what your Dr. says or how they treat you, for God’s sake people, get a new Dr.!)
I have been on statins for many years getting the best results with the lowest dose using Lipitor. Lipitor has been around the longest and so has the most information and long term experiences. I am no fan of big Pharma but when you’ve tried diet, exercise, weight loss and it produces no notable change in your cholesterol levels, you begin to realize there are different causes. Menopause and lowering hormone levels trigger higher levels, genetics play a role. One size does not fit all when it comes to this issue.
For a variety of reasons I decided to try a low dose HRT regimen using bio-identicals. That helped lower my cholesterol to the lowest it’s been in many years and I am no taking only 10 mg. of Lipitor daily. My numbers are in the best range they’ve been in a long time.
My mother died from ALS many years ago (no statins involved) but after reading all of this I was alarmed. I’d love nothing more than to get off the statins completely but you have to weigh the risks and benefits. Heart attack (which my father had) or ALS (mother) or cancer? Pick your poison I guess. I do know that the OTC treatments such as red rice yeast etc. all have side effects and issues, may not work for everyone and can be costly so they are not necessarily the answer either.
I would say I have minor memory issues and minor muscle pain which I can’t specifically attribute to statins. I am concerned but I need more information before I give up my Lipitor. Are there any scientific studies under way?

My husband, Phil, took Lipitor and developed ALS. Before being put on this drug, he was is great shape, very active, and a pillar in his community. Although he is still alive today, he is bedridden and has lost the ability to move, speak, and swallow. He does communicate with a Dynavok device. I have done a great deal of research and there is no doubt in my mind that Lipitor caused his ALS. I strongly suggest that anyone taking this drug stop immediately.

My husband was on Lipitor for a couple of years. He had an arthritic hip and had issues walking, after hip replacement he noticed both legs having issues (we think the arthritic hip ‘masked’ the leg issues) and developed drop foot.

Eventually going to a walker, then full wheelchair and currently he is not mobile on his own on any level. When he was diagnosed with ALS they IMMEDIATELY took him off Lipitor. My thought is that some people may be genetically more susceptible to the issues (ALS one of them) than others.

The fact that Lipitor has known muscle side effects makes me wonder if the drug was the cause of his ALS. We went from being 60+ and Mountain Biking, hiking, backpacking, camping, golfing and other strenuous activities to 0 in 6 short months. Our lives are very challenging and his legs are dead and have to be manually moved, his upper body is weakening and he has trouble maintaining his body upright when sitting and can’t sit up on his own. It seems that every 3 to 6 months we have to adjust and then he plateaus for 3 to 6 months before the next change.

We wanted to retire and travel but that’s not going to happen now. Thankfully we went to Italy for 3 weeks (pre ALS) and on a River Cruise in Europe for 15 days while he was still able to stand and use a walker a bit. His mind is clear but his heart is heavy.

Discovering this blog and reading this shortly before Easter 2009 and the second anniversary of my mother’s death, I am horrified. My mother was on Lipitor for about a year before being diagnosed with ALS at age 74. There was no history of this disease in our very large family. She died 14 months after diagnosis. Who makes Lipitor?

The comments related to this article sadden me. I lost my father to ALS in November of 2008. Several years prior, he had been diagnosed with Huntington’s which runs in the family. No one thought much of the slurred speech and muscle weakness. One illness is NOT related to the other. We both believe that the ALS was brought on by seven years of taking Lipitor. He stopped taking it as soon as we found comments on-line linking the two.
Of course, his doctors denied any connection. My father was a hard working, energetic, strong man who was not overweight a day in his life. At the tender age of 64, Lipitor took him from this earth way too soon! If you take a statin drug, be VERY cautious! I encourage you to look for alternative solutions.

Started on Simvastatin three months ago, and have now (for the past three weeks) developed serious pressure pain in the heels of both feet. I do not have high cholesterol, but was prescribed the statin “as a precautionary measure” because of my high blood pressure, and because a few years ago I apparently had a transient ischemic attack or mini stroke (trouble seeing in one eye). I’m fit, 70, have a healthy diet and , until the painful heel problem, plenty of exercise. So, no more statins for me!

I’ve been on Lipitor and Vytorin for about 2 years and I have started to feel weakness in my legs. I still run 2/3 miles a day and lift weights (43 yrs old), no pain but the weakness in my legs is very noticable. My doc did confirm that it could be the statins and recommened that I go off them for a while and see if the strength comes back. Glad I found this page as I thought I was the only one with this crazy problem.

My sister was on Lipitor less than a yr. She developed ALS. She is on a respirator now.

My brother was recently diagnosed with ALS, and it is progressing rapidly. He is convinced that it was caused by statin cholesterol-lowering drugs. I took statin drugs for over 2 years, stopped, tried again several times with several different statins only to realize that they cause extreme muscle fatigue/pain. I have recently injured my achilles tendon, experience some twitching at times, some numbness in feet, a little fidgety and a sense of bugs crawling on my skin. If I did not have a brother with ALS and did not take statins, I would not think anything of these symptons.

I’ve been on Crestor for about 3 months because of high triglycerides. I’ve been having some pretty severe knee pain since then that my Doc diagnosed as medical ligament strains in both knees. My history fits the diagnoses but healing if any seems to be very slow…
I think I’ll try 2 weeks without Crestor.

I have been on simvastatin since 1990.Recently Ihave been diagnosed with Plantar Fasciitis Had it since this February 2008 had no treatment for it & it is agony like walking on glass with electric shock style pains in the toes after sitting down I cant see the specialist until 29April.
I am getting more & more nervous of Statins i gave them up just before i had the ankle trouble as i was having sleeping problems& memory problems & writing problems Muscular pains disorientation
My doctor thinks I should take Lipitor I am not going to do it I have blood pressure 6 but I do use a low fat diet plenty of olive oil Veg fruit little sugar I live in the UK & love walking everywhere

I was taking Lipitor for about ten years when I developed real bad pain in my arms and legs to the extent I would cry after I was in bed about 1-2 hours and had to get out of bed and move around for one hour and repeat the same thing all night. My family doctor and heart doctor both thought it was not the Lipitor.
I stopped and was getting better in 3 weeks off the drug.
Never again.
Keep up your great work of telling the truth.

My father began taking Lipitor in Nov 2002, was diagnosed with ALS in March of 2003 and died September 22, 2003. My family has since believed there has been a connection between his death and lipitor. We are wondering what is currently being done to substantiate this claim and prevent further deaths.

A couple years ago my father had very high cholesterol and was overweight. Instead of changing his lifestyle and diet, his doctor recommended that he Lipitor. He was on Lipitor for about two years before he started noticing symptoms of slurred speech. In January of 2006 he was diagnosed with ALS. He has bulbar onset which attacks the muscles in your throat and mouth region first. He lost his ability to speak, swallow, and eat. He is still able to walk, however some of his mobility is affected. Unfortunately, there is no cure for ALS and we have seen his symptoms slowly progress over the past two years.
Just after his diagnosis, my father started doing extensive research on ALS and health in general. He became fanatical about organic lifestyles and natural remedies and truly believes that he developed ALS because of all the toxins he allowed into his body (one of them being pharmaceutical drugs). He firmly believes that Lipitor was the instigator of his neuron degeneration.
His GP and neurologists do not confirm or support the idea that there is a connection between statins and ALS. This might be because there is no scientific evidence linking the two, but it could also be because statins are the top-selling class of prescriptions on the market and doctors receive compensation for those prescriptions. Over 25 million prescriptions for statins have been released to the public and pharmaceutical companies are making billions of dollars from this product.
Pharmaceutical drugs can be a blessing for many people. However, our society is so quick to take pills for our ailments instead of seeking out natural remedies. My father could have avoided taking statins if he had been more educated and lead a more active and healthy lifestyle.

I was put on a daily dose of Lipitor three years ago and also developed severe pain in my muscles and joints. Finally, the day came when I could not walk to my car. I went to a rheumatologist and after my exam he told me “do not ever take another statin drug”. I told my Internist that I was not going to take the drug anymore and he was angry. He said “would you rather die of a heart attack or have a few sore muscles”. An astounding thing to say to someone. That was my experience with statins and my doctor! Needless to say I do not take statins.

My 82-year-old father had been on Lipitor for several years, then moved to Crestor within this last year. For one year now, he has had hip/leg problems, and has told me on several occasions that he feels his legs are now too wobbly… too weak. This is a man who 5 years ago would walk 5 miles every day, sometimes in the coldest Nebraska snow, and who can still outwalk me (I’m 42, and NOT overweight!). I’m beginning to think there is something to this link!

I have been experiencing heel pain for some time. It is at its worst first thing in the morning and every time I go to walk after being off my feet for a period of time. I have been using Crestor for a couple of years and interested to see if anyone else has had similar experience. I have noticed comments about statins and heel pain.

I took Zocor for 2 years, and since then I have experienced weekness, pain, and my joints have been unreliable.

My podiatrist believes I may have had nerve/muscle damage to my feet after taking statins. I went from being a runner/walker to spending 5 years unable to walk for enjoyment. Each step I took was painful and if I was on my feet for any length of time I would have extreme pain. I am now on Lyrica to see if the pain in my feet I’ve had for 5 years goes away.
I am convinced statins (Lipitor, Pravachol, Crestor and Zocor, and also Zetia) caused my foot and heel pain and the incredible itching/burning in my feet and legs that would wake me at night.
I stopped the meds and am taking COQ-10, fish oil, flax oil and psyllium husk for my cholesterol.

My father was perscribed lipitor in March of 2004, subsequently he developed muscle weakness and numbing and stopped taking it. The weakness did not go away, he got progressively weaker and was recommended to see a neurologist.
In September of 2004 the neurologist diagnosed him with ALS. When I told her Lipitor triggered the ALS back in October of 2004, the neurolist denied the connection. In January 2005 she said they’re now investigating a possible link.
Prior to taking lipitor my dad was very fit and strong, I could’nt keep up with when we hiked. He died in March of 2005, one month after his birthday and less than one year after taking lipitor.
Thank-you for making this site, the comments I read gave me chills. My father would not have died within 1 year if he just had mildly elevated cholestrol, statin RX should be taken off the market!!!!!

I have been taking Lipitor for years–probably more than 8–and I have no problems with my muscles or any pain at all. Reading everything on this website is really scary.

Statins deplete CoQ10, and that is the purported cause of muscle weakness. If one must continue statins, supplementation with CoQ10 is apparently advised. To get an adequate dose, plan on spending some $ though, as this is an expensive supplement.
Hope this helps.

I have been taking Zetia for over 3 years. During this time, I’ve endured months of physical therapy for my feet and back, but it hasn’t helped.
I’ve had to leave a job due to foot and ankle pain and back pain. I’ve had surgery on both of my feet, but it didn’t help. I’ve had injections in my back to ease pain with no result. I’ve spent thousands of dollars and become almost disabled.
I read these stories and wonder if stopping this medicine will give me back my life. I’m stopping today and will tell everyone if this agony stops.

My Doctor said my cholestrol was high, and put me on Crestor. I had the same experience, weaked muscles. I could hardly walk for pain in my whole body. I felt 100 yrs. old and I am not there yet! I quit using them and feel much better.

I was placed on 40mg of Zocor daily to lower my cholesterol.Within 2 months, I suddenly experienced such severe leg weakness, that I couldn’t continue my Bowling game. The doctor then took me completely off the Zocor pill and my muscle strength gradually improved over time, but now, three years later, I still don’t have nearly the muscle strength I used to have. I now control my cholesterol by proper diet, (low saturated fat content), and plant sterols found in food supplements.

My heart doctor put me on Crestor. For three months. I was waking in tears 2 or 3 times almost every night with severe leg cramps. During this time, my granddaughter invited me to an art show at her school, and when it was over, I had to walk a very long way from the art show to the parking lot where my car was. By the time I got to the car, I was in tears.
I stopped taking Crestor. The cramps continued for about two more weeks. I still experience weakness in my legs just from walking up stairs, but the pain is gone.
The doctor said he doubted Crestor had anything to do with the cramps and weakness, which I find insulting since the warnings tell you that they may cause pain and weakness! I will never take statins again.

I have used Lipitor and every other statin. All gave me muscle pain. I was then given Zedia it was great for a short period of time. Then later, 6 momths or so, it caused the greatest of discomfort. Muscles, joints and areas of previous surgery. I reduced to every other day, same results. I will try twice per week. If the results remain I will stop using this drug as well.

I have been on Lipitor for a year or two. It has seemed to affect me in several ways. I had polio as a child and have a week leg and shoulder. I have started to get some weakness prior but I think the Lipitor has speeded the weaknes up. I also had excessive irregular heart beat and when I stoped taking Lipitor that subsided some.

I am ocncerned about this possible connection btween ALS & statins as my husband & I are both on VItorin and Welchol. How do people know that their ALS wasn’t coming on anyway and is coincidental to their useage of statins? BOth our doctors claim there is no connection….I am nervous!!!

I had been on Lipitor for 5 years, and I noticed muscle weakness, poor control of my legs and feet, and some difficulty walking. I mentioned this to my doctor, and he discounted it as aging and not eating enough protein. I’ve stopped the Lipitor, and I am controlling my blood profile with supplements.

My doctor insists that I must take statins even though I experience pain on all of them to the point that I am struggling against tears when I walk down the hall of my child’s school. He says I should accept what he calls “a little discomfort” because of statistical studies. He is angry with me because I refuse to take them.
What kind of connection does this insistence by doctors have with the huge advertising push for these drugs? Who is ultimately responsible for my health? Myself or an arrogant doctor?
They say this pain is rare, but many people I know have had the same severe muscle pain.

I was put on Cholestrymine to lower my cholesterol. After taking it for about a month, I developed stiffness in my fingers, heel pain, and knee pain. When the knee pain kept me awake nights, I decided to go off Cholestrymine.
The stiffness & heel pain went away, but the knee pain persisted, so I sought treatment for it. After an MRI, the doctor said it showed nothing but moderate joint fluid. I then got a cortisone shot, which helped for a short time. At age 60, I thought I was doomed to walk with a cane for the rest of my life, or have a knee operation.
After much research about diet & specific exercises, I then went to a chiropractor.He gave me treatments of electro-stimulation and ultrasound for about a month. My knee gradually got better.
After having pain in my knee for about one and a half years, I am still pain free five years later. I take no statins, and lower my clolesterol with diet & vitamins.

I got severe cramps in the front of my legs from Zocor and Felodipine I’ve been on Zetia for about three months; no problem so far.

My husband was put on Zetia four years ago, and immediately began experiencing muscle pain, so his doctor told him to stop taking it after just one month. Within two weeks after that, he became weaker and weaker, and was diagnosed with myasthenia gravis while in ICU on a respirator, in full myasthenic crisis. Shortly after his two month recuperation in rehab, he tore both Achilles tendons, and has never regained his ability to walk normally. He is very firmly convinced that the Zetia was responsible for all of this.

In February my father was diagnosed with a variant of ALS. Prior to his diagnosis he was taking lipitor and was convinced that the drug was responsible for his symptoms. He stopped taking it after he noticed symptoms, but the disease has continued to progress.

I am on 20mg of Crestor each day to lower lipid A and cholesterol. I have always been strong, my muscles and tendons always reacted well to strength training and the variety of sports that I enjoy.
During the last couple of years, though, I feel that I have had a noticeable decrease in strength, and premature tiring of muscles when exercising for long periods of time. This year, I tore an Achilles tendon. Hiking with a 50 lb backpack, I managed to complete eight miles of a ten mile planned hike. My feet, ankles and calves became swollen, painful and deep red in color. I have climbed and hiked in the mountains over a period of many years in the past, and have never had any problems with tendons, shin splints, or muscles. I tore the Achilles tendon following three days of recovery when I attempted to make a small jump over a hose lying in the grass in the back yard. After the injury of the tendon, infection occurred in the right foot.
I am interested in any professional thoughts regarding my going off Statin drugs and trying to keep my lipids and cholesterol in check through diet.

My sister died of ALS a little over a year ago, and she was on Lipitor for a year prior to getting the disease. She always said the ALS was from the Lipitor.

While taking Crestor and then Zetia, I experienced muscle pain. I may have some Osteo-arthritis, but my muscle pain increased on these medications. Also, I felt more tired while taking the meds. I have discontinued use of Statin drugs.

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