Statin discontinued due to neuropathy. What are some alternatives?

Posted by Nazir Khan @nukhan, Jan 19, 2020

I have been using Lipitor since 2007 for lowering my cholesterol which is on the list of those medicines that are suspected to cause neuropathy. I am thinking of discontinuing this menace but before doing so want to check with those members who have discontinued using statin and what is their experience. What alternative methods have they since adopted for lowering their cholesterol .. diet, alternative medication, exercise or anything else ?

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Last April my doctor told me my cholesterol was high (I don't remember the number because I'm not going to obsess over it). Before he could prescribe statins, I told him I wouldn't take them because of my neuropathy. He
suggested red yeast rice which is what he takes. After 3 weeks my neuropathy started to worsen which is when I discovered the RYR has the same active ingredient as statins. After seeing other recommendations on Mayo Connect and elsewhere, I began taking Citrus Bergamot. This didn't appear to affect my PN. Recently I chose to try adding RYR back in on random days, but it felt like it again affected my PN so I stopped. Six days ago I had a followup with my doctor who reported that my numbers had gone down some but... I told him I wouldn't go on statins and risk my PN worsening. He didn't reply to that and changed the subject. So I guess I'm on my own here. Again, not obsessing on numbers. I'm 68 and know we all die someday, and again - not obsessing.

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@karen1945

My mother had high cholesterol….total over 300. She refused to take statins. She died at 94…NOT of a heart attack or stroke.

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That's reassuring :-). My PCP has a patient in her mid-90s with extremely high cholesterol that didn't respond to any drugs they tried but she did her own grocery shopping, carried her own groceries home, did all of her own cooking and housekeeping. And had an active social life. Her descendants were doing nowhere near as well as she was and she wasn't at all concerned about her cholesterol. The last I heard, she was 97 and still going strong, lol.

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@callalloo

That's reassuring :-). My PCP has a patient in her mid-90s with extremely high cholesterol that didn't respond to any drugs they tried but she did her own grocery shopping, carried her own groceries home, did all of her own cooking and housekeeping. And had an active social life. Her descendants were doing nowhere near as well as she was and she wasn't at all concerned about her cholesterol. The last I heard, she was 97 and still going strong, lol.

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Cholesterol is a necessary part of our chemistry. Our brains need it to function. I’m no doctor, but I think the emphasis on lowering it in everyone may not be doing them any favors. My mom had a test on her carotid artery that showed extremely low evidence of plaque. We’re all different. “One size fits all” doesn’t work for everyone when it comes to cholesterol. We are what we are. Eat right and lead a clean life.

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From Healthline:
"If you have high cholesterol, consider adding beet juice to your diet.
A 2011 study on rats found that beetroot extract lowered total cholesterol and triglycerides and increased HDL, or “good,” cholesterol. It also reduced oxidative stress on the liver.
Researchers believe beetroot’s cholesterol-lowering potential is likely due to its phytonutrients, such as flavonoids."

Beets are also great for lowering blood pressure.

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@callalloo

I have chronically, likely congenital, high cholesterol and am unable to tolerate any of the known statins as they all cause severe and frightening muscle cramps.

My diet is a work-on-progress as I'm struggling to cut out any and all refined foods but have added a lot of fresh vegetables and pectin-rich fruits.

The most recent bloodwork showed a reduction in total cholesterol and, interestingly, the highest level of HDL that the tests have ever shown. My theory, based on zero science I hasten to add, is that pectin and fiber might 'scoop' up fats as they meander through the GI tract. And keep a lot of it unavailable for plaque-formation or arterial buildup.

I say this as I had a similar result decades ago when, coincidentally, eating a lot of fresh produce and making no other changes. So I'm motivated to continue to improve diet for health reasons and my own unofficial science experiment. [I also had a calcium score of 0 at that earlier time. The most recent calcium score was 4, five years ago. All of my deceased relatives died of 'heart attacks' or stroke, so high cholesterol was a big worry. A good echocardiogram and endopat score helped reassure me a lot.]

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My dr put me on nexlizet a new non statin cholestoral drug and it has brought down my cholestoral more than a statin. Legs still hurt but they feel its the neuropathy.

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@deanna2

From Healthline:
"If you have high cholesterol, consider adding beet juice to your diet.
A 2011 study on rats found that beetroot extract lowered total cholesterol and triglycerides and increased HDL, or “good,” cholesterol. It also reduced oxidative stress on the liver.
Researchers believe beetroot’s cholesterol-lowering potential is likely due to its phytonutrients, such as flavonoids."

Beets are also great for lowering blood pressure.

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My opinion regarding beet juice for cholesterol: Better to eat fresh or canned beets or beet powder mixed in other food than to drink beet juice because like most juices, beet juice is high in sugar. Beet juice contains 16 g. of sugar per serving, while the other forms of beets contain only 3 to 4 g.

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@johnbishop

Hi Jeff @jeffrapp, My primary care doctor wanted me to take a statin to help lower my cholesterol. In my case, I made the decision not to take it and work on lowering my cholesterol through lifestyle changes. This was shortly after I received my initial diagnosis of idiopathic small fiber PN and started doing some research on what helps and causes. I had neuropathy long before being diagnosed and at one time was on a statin in my 50s for high BP but my meds were changed after I participated in a Mayo Clinic heart study and my diagnosis changed to primary aldosteronism and I was given spironolactone instead of the statin if I remember correctly. I had found articles discussing statin induced neuropathy which I discussed with my doctor as the reason to not take a statin to lower my cholesterol and to figure out how to do that without meds. Here's some of the research I found:

-- The implications of statin induced peripheral neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3103035/
--Statin Neuropathy Masquerading as Diabetic Autoimmune Polyneuropathy
http://care.diabetesjournals.org/content/28/8/2082.1
-- Statins Have Unexpected Effect on Pool of Powerful Brain Cells
https://www.urmc.rochester.edu/news/story/2051/statins-have-unexpected-effect-on-pool-of-powerful-brain-cells.aspx
-- Medication Induced Neuropathy
https://link.springer.com/article/10.1007/s11910-003-0043-8

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Are we referring to all satin drugs here or is it just Lipitor that affects neuropathy?

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@tessie63

Are we referring to all satin drugs here or is it just Lipitor that affects neuropathy?

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Actually all statin drugs but I wouldn't stop taking any of them without talking with my doctor. Also, just because statins have been linked with neuropathy there might be a lot of different factors involved for each person.

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Some have been linked to dementia as well.

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@karen1945

Some have been linked to dementia as well.

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Hi
This may be true, but there is low quality evidence for it. The opposite is overwhelmingly true.
Here are quotes from recent journal articles: "Individuals of 50 years and older who were prescribed statins had a substantially lowered risk of developing dementia, independent of the presence or absence of untreated hyperlipidaemia, or exposure to non-statin LLAs."
"Based on epidemiologic studies as well as case reports, a risk of peripheral neuropathy associated with statin use may exist; however, the risk appears to be minimal. On the other hand, the benefits of statins are firmly established."
I point this out only to alert readers that when considering which medicines to take or not, they should avail themselves of the latest scientific information, which is often very hard for an untrained layman. That's what medical providers are for.

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