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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@steveny9

I developed small fiber neuropathy from taking simvastin over a period of 7 or more years. If I had know that my feet, toes, legs and finger tips would have developed numbness due to the statin I would have rethought the doctors recommendation. Statins seems to be a quick fix but I believe now I should have reduce my intake from 20 mg to 10 mg and then perhaps every other day. At the moment, I am taking 2000 mg of fish oil, 100 mg of Magnesium and CO Q-10 100 mg. I am testing my LDL monthly as I reduce statins to 3 to 4 times a week at 10 mg. In addition, I am talking to an alternative doctor for healing. Is it better to develop neuropathy or reduce the risk of a stroke/hear attack? My doctors decisions were to protect me from heart disease 20 plus years ago. At 65, I am rethinking if I want to let this neuropathy progress faster by taking statins and reducing the risk of heart disease. It is a tricky corner.

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I was on a mild statin but moved to Texas and therefore changed Doctors. He told me to get rid of the statin drug and take vitamin B3(niacin) 500mg daily there is also a prescription strength at 1000mg. Niacin does the same thing as a statin drug of course check with your doctor but also read up on niacin ( vitamin B3) also take Coq10 which is vital to your heart because statin drugs also deplete this from your system

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@steveny9

I developed small fiber neuropathy from taking simvastin over a period of 7 or more years. If I had know that my feet, toes, legs and finger tips would have developed numbness due to the statin I would have rethought the doctors recommendation. Statins seems to be a quick fix but I believe now I should have reduce my intake from 20 mg to 10 mg and then perhaps every other day. At the moment, I am taking 2000 mg of fish oil, 100 mg of Magnesium and CO Q-10 100 mg. I am testing my LDL monthly as I reduce statins to 3 to 4 times a week at 10 mg. In addition, I am talking to an alternative doctor for healing. Is it better to develop neuropathy or reduce the risk of a stroke/hear attack? My doctors decisions were to protect me from heart disease 20 plus years ago. At 65, I am rethinking if I want to let this neuropathy progress faster by taking statins and reducing the risk of heart disease. It is a tricky corner.

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My dr put me on nexlizet which is a non statin cholestoral reducing drug and it is working even better than statin as far as bringing levels down, It is a little costly but I couldnt take statins any longer with the neuropathy

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@txbunny67

My doctor put me on Rapatha, maybe ask your doctor about that one.

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That drug is extremely expensive - over $ 1000

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@safarigoddess

That drug is extremely expensive - over $ 1000

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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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@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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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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@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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I stopped taking statins after prescribed back in 2017 because it was causing severe muscle aches. and 3 yrs. later my new cardiologist (who I went to for a "wellness" check up because I had no symptoms and had not been to one in 25 yrs. ) did 6 tests and on the 6th one (camera ) found a triple blockage ( yes no symptoms !!) that was 2 yrs. ago, and since then tried 2 statins, both after approx 6 wks, I developed muscle damage (severe pains and leg cramps.and on top of that, I had to stop exercising which was depressing !! I am now going to get a CK (creatinine kinase ) to see if in fact there is muscle damage. I have now gone back to a non statin, which is only 10mg but did not lower the cholestorol enough, and after 2 wks, muscle pain subsided, so now I added an FDA approved supplement -Cholest 1MD to see if in 3 mth, it has helped ,along with another called Nutrim . So, we will see !!!!

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@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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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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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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@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.

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