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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Profile picture for deanna2 @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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Profile picture for callalloo @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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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.

REPLY
Profile picture for callalloo @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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Profile picture for karen1945 @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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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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Profile picture for callalloo @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 mother had high cholesterol….total over 300. She refused to take statins. She died at 94…NOT of a heart attack or stroke.

REPLY

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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Thank you to all who responded, in particular John's research and posting of references.
I certainly am not an expert in this area, and my research has not been complete.
John's references are pretty old (from around 2002 at the latest), small, and often from obscure journals or articles, which are not themselves the result of standard research methods.
I have found some more resent papers (for example https://onlinelibrary.wiley.com/doi/abs/10.1111/jcpt.13393), which indicate that there is not yet enough evidence to conclude that statins definitely cause PN. Of course, that doesn't mean they can't.
I struggle with the same question personally, as I take Lipitor and have Idiopathic Small Fiber PN. Even now, I am taking a 2 month "holiday". Who knows why? Like so many other issues regarding PN, there are many questions with no definite answers.
There is some recent evidence regarding at what age a patient can stop statins. This may be an answer for at least us ancients. Speak to your doctor, and if they're not aware of this, ask them to research this for you.
Good luck!

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Profile picture for jeffrapp @jeffrapp

As there are many types of peripheral neuropathy, and, as I understand it, the evidence for statins causing PN is present, but not strong, I would appreciate it if those who have discontinued taking statins because of a concern that they might cause PN provide us with studies that support this action. Also, what type of PN were you diagnosed with?
Hyperlipidemia is a strong predictor of heart disease, stokes and other serious problems. Treatment with statins should be discontinued only if there is strong evidence of of serious harm.
BTW, I don't believe nexlizet is covered by MediCare. Paying out of pocket would hurt.

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Bergamot has been mentioned as an alternative. Lifestyle change is best.

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