Statins and peripheral neuropathy

Posted by jacquespierre @jacquespierre, Apr 26, 2019

I have been taking cholesterol medication for the last 20 odd years and a year ago I was diagnosed with PN… burning, numb, painful lower legs and feet… no doctor or neurologist seems able to help me so I have decided to make peace with the fact that my condition cannot be cured. Can anyone tell me if there is any natural cholesterol medication I can use in stead of the chemical one that contains the harmful statins? Will it improve my condition if I stopped taking the chemical cholesterol medicine?

@lisalucier

Hi, @kazz30 – when you say your statin prescriptions were unsuccessful, do you mean at lowering your LDL? Have you experienced any side effects with the red yeast rice capsules?

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Sorry, my response inadvertently sent , I wasn't finished. My PN / Spinal Stenosis were detected in 2013 while I was taking Statins from the Cardiologist. After complaining about muscular pains , my PCP advised Red Yeast Rice to lower my LDL cholesterol which it did, was 110 now 90 and so did effects. Cardio seems ok with LDL @ 90 and continue Red Yeast. Hope this clarifies my experience.

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@lioness

@ruthofanne Hi I'm now on Creator ,rovustatin the generic this is the only one that brings my cholesterol down and doesn't bother me of course watch your diet

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Ruthofanne: Pleeaaasssseeeeee stop taking Crestor (Rovustatin)! I was prescribed this strongest of the Statin drugs for 8 years and now need help going down my three front steps because of numb, tingling and needle piercing pain in my feet and a terrible balance problem. I've been taking 1 tablespoon of Bragg's Organic Apple Cider Vinegar (32 oz. bottle) mixed in an 8 oz. glass of cold water every morning BEFORE breakfast for a year and a half and last week's visit to my PC showed normal Cholesterol readings including LDL.This is ALL I take to manage my Cholesterol and it can be found in most grocery stores. PLEASE READ:

Statin Drugs May Increase Risk of Peripheral Neuropathy
St. Paul, Minn. – Statin drugs can increase the risk of developing peripheral neuropathy, according to a study published in the May 14 issue of Neurology, the scientific journal of the American Academy of Neurology. Peripheral neuropathy results from damage to the peripheral nerves and causes weakness, numbness and pain in the hands and feet. Statin drugs are prescribed for millions of Americans to lower cholesterol. People taking statins were 14 times more likely to develop peripheral neuropathy than people who were not taking statins, according to the Danish study. However, the overall risk of developing neuropathy is rare, said study author David Gaist, MD, PhD, of the University of Southern Denmark in Odense. "The positive benefits of statins, particularly on reducing the risk of heart disease, far outweigh the potential risk of developing neuropathy," Gaist said. "These findings shouldn't affect doctor or patient decisions to start using statins. But if people who take statins develop neuropathy symptoms, they should talk with their doctor, who may reconsider the use of statins." For the population-based study, the researchers used a patient registry to identify all of the first-time cases of peripheral neuropathy with no known cause (such as diabetes) in Funen County, Denmark, over a five-year period. Each case was matched to 25 people of the same age and sex with no neuropathy as a control group. The use of statins was then determined for each group. They identified 166 cases of first-time neuropathy with no known cause. Of those, 35 had a definite diagnosis, 54 were probable cases and 77 were possible cases. Nine of the people with neuropathy had taken statins. They had taken statins for an average of 2.8 years. For those with a definite diagnosis of neuropathy, the statin user’s risk of developing neuropathy was 16 times higher than for the control group. When all cases of neuropathy were taken into account, the statin user’s risk of developing neuropathy was four times higher than the control group’s risk. Taking statins for longer periods of time and taking higher doses of them increased the risk of developing neuropathy.

Statin-induced neuropathy is increasingly described. Proposed mechanisms include an alteration in cholesterol synthesis, producing a disturbance in the cholesterol-rich neuronal membrane, or in the activity of ubiquinone (coenzyme Q10), a mitochondrial respiratory chain enzyme inhibited by statins leading to neuronal damage (1). The entire class is implicated, and both polyneuropathy and mononeuropathy have been described with improvement or even complete resolution occurring with cessation of therapy (1). In all cases, clinical improvement occurred soon after statins were discontinued, and in the absence of specific clinical, biochemical, or electrophysiological characteristics, this has become the key diagnostic feature of statin-induced neuropathy. To date, autonomic features accompanying symmetrical neuropathy have not been described.

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Here's some Mayo Clinic information on statins and side effects that may be useful to read https://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/in-depth/statin-side-effects/art-20046013

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I take pravastatin, and have taken statins for the past 20 years or so (lipitor, zocor, etc.). I am borderline and can control without taking them.

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@jeffrapp

I am both a sufferer and a doctor.
I have recently joined this forum, looking for an answer to this maddening disease. My diagnosis is idiopathic small fiber peripheral neuropathy.
With all due respect, I find posts such as the one by dutchman09 above to be unhelpful at best.
As far as I can tell, there is no definitive evidence that statins cause PN, although there is some evidence. I myself have taken statins for high lipids, but have stopped because of the possibility that they have contributed. When I discussed this with my MD, she was not dismissive, but pointed out that instead of suffering with PN, I may instead suffer from a stroke or heart attack. Chose your poison. It's complicated.
Almost all MD's I know do their best to provide validated information to their patients. They generally do not push medications, unless there is good scientific evidence of their effectiveness (as is true of statins). BTW, there is no good scientific evidence that apple cider vinegar works for PN. However, if it helps you, and doesn't hurt (which you may not realize for several years) go for it!
The doctor's do not "cop out" when there is no definitive cure. They simply do not know. They stopped being God a long time ago. My experience is that most MD's are quite open to trying new things (alternative medicine), when they do not have the cure.
Getting angry will only make you feel worse.

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@jeffrapp, I'm new to Mayo Clinic Connect, just seeing this post and wanted to comment. I am in agreement with your take on the medical professionals, but I do see how people might feel "dismissed" after visiting their respective doctors. If I quote some of the things my neurologist has said, I can make him out to look dismissive, but, I can tell you he is NOT. Right now after some thorough testing, I've basically been told that I have polyneuropathy, some vitamins may help and it isn't likely to progress.
I wish that I could sit him down and discuss everything he knows and doesn't know about my exact condition; what he's learned from the research and from the hundreds of patients he's treated. I'd like for him to give me a detailed explanation of the terms used and results given on the tests I've taken. And I want him to explain to me exactly why he chose the diagnosis he did and his likely prognosis for progression of my particular disorder. Oh, and why the condition has so many variables.
But, that is really asking a lot. It would require having him over for dinner followed by several hours of discussion. And that's only because I have a decent background in anatomy and physiology. Otherwise, we might need a week-end together or maybe a semester of classes!
I've learned that I need to take on more responsibility for learning and understanding the details of my exact condition and it's status in the medical field. Basically, that's why I'm here! I want to pick the minds of those who know! So, if you're free for dinner, I still have a ton of questions, LOL!

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@mamamarch

@jeffrapp, I'm new to Mayo Clinic Connect, just seeing this post and wanted to comment. I am in agreement with your take on the medical professionals, but I do see how people might feel "dismissed" after visiting their respective doctors. If I quote some of the things my neurologist has said, I can make him out to look dismissive, but, I can tell you he is NOT. Right now after some thorough testing, I've basically been told that I have polyneuropathy, some vitamins may help and it isn't likely to progress.
I wish that I could sit him down and discuss everything he knows and doesn't know about my exact condition; what he's learned from the research and from the hundreds of patients he's treated. I'd like for him to give me a detailed explanation of the terms used and results given on the tests I've taken. And I want him to explain to me exactly why he chose the diagnosis he did and his likely prognosis for progression of my particular disorder. Oh, and why the condition has so many variables.
But, that is really asking a lot. It would require having him over for dinner followed by several hours of discussion. And that's only because I have a decent background in anatomy and physiology. Otherwise, we might need a week-end together or maybe a semester of classes!
I've learned that I need to take on more responsibility for learning and understanding the details of my exact condition and it's status in the medical field. Basically, that's why I'm here! I want to pick the minds of those who know! So, if you're free for dinner, I still have a ton of questions, LOL!

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Hello @mamamarch, and welcome to connect.
Thanks for the dinner invitation!
Unfortunately, by this time, you probably know almost as much useful information about PN as I do.
Like many neurologic diseases, PN can be quite maddening. The diagnosis is complicated, the causes are often unknown, and the treatment is usually barely effective, at best.
Further complicating things, neurology has become a victim of the ridiculous way physicians are paid in this country. Ones who mostly think (internists, pediatricians, general practitioners, etc.) are paid much less than ones who do procedures (various surgeons, cardiologists, dermatologists, etc.).
I was a board certified ER doc. We used to have a semi-serious saying: "Don't just stand there thinking, do something". The procedures we did were much higher paying than our thinking.
Neurology is especially hit hard. Before MRI's, etc., all they did was make an often difficult diagnosis the old fashioned way, and then be left with almost no effective treatments. Now, with MRI's, most of the diagnoses are made with imaging studies, and there still are no very good treatments.
So, no, your neurologist is not likely to spend hours with you. He/she will likely feel rushed to see you in the short time allotted for your appointment, complete your chart, order your meds and tests, fill out ridiculous insurance and other forms, etc. These same dynamics likely apply to other specialists you see.
If you would like to read about a neurologist who somehow found the time to spend weeks and months with one patient, read the books by Oliver Sacks, who became famous after the movie "Awakenings", which was about one of his stories.

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