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 ?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@jacquespierre

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?

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I'm finding this discussion representing many points of view and maintaining respect, for that I thank all of you.
I can certainly understand the drive to finding causes and relief from neuropathy, and hoping for prevention and cure. Anecdotal evidence can lead to research. I sincerely believe that doctors as much as patients wish there were more to do and offer to help patients with all types of neuropathy. I agree that one must weigh the risks of not taking a statin with the risks and benefits of the drug to prevent stroke or a cardiac event. For each person that bears a discussion with their doctor.

Here are a few recent articles I found on the topic.
- Statin side effects: Weigh the benefits and risks (Mayo Clinic) https://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/in-depth/statin-side-effects/art-20046013
- Statins do not increase risk of polyneuropathy (American Academy of Neurology) https://n.neurology.org/content/neurology/early/2019/02/08/WNL.0000000000007148.full.pdf
- Statin Toxicity (Circulation Research) https://www.ahajournals.org/doi/full/10.1161/CIRCRESAHA.118.312782

Excerpt
"Neurological conditions that have been associated with statin use include hemorrhagic stroke, cognitive decline, peripheral neuropathy, depression, confusion/memory loss and aggression, and personality changes.19 It is unclear whether these are because of the direct action of statins given the blood-brain barrier’s selective permeability to substrates and the brain’s self-sufficiency when it comes to endogenous cholesterol synthesis. Lipophilic statins are thought to have a higher risk because of their increased ability to cross the blood-brain barrier; however, it should be noted that these effects may not be specific to statins per se and instead a result of low cholesterol levels."

@dutchman09, thanks for the clarification about why you are using apple cider vinegar and that it is not to help manage peripheral neuropathy. Here is some information about apple cider vinegar.
- Apple Cider Vinegar and Your Health (WebMD) https://www.webmd.com/diet/apple-cider-vinegar-and-your-health

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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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Many doctors today still like to play "God". I was relating a personal experience with a doctor who does not deserve to keep her license. Back in the day doctors hated when patients got used to the Internet and would start to contradict their diagnosis. I'm just sorry I did not do it sooner. You twisted my words around but that's not uncommon for someone in the medical profession. It's not worth the argument. If your both a sufferer and a doctor then I'm sure you've heard the expression "Physician heal thyself"!

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@dutchman09

Many doctors today still like to play "God". I was relating a personal experience with a doctor who does not deserve to keep her license. Back in the day doctors hated when patients got used to the Internet and would start to contradict their diagnosis. I'm just sorry I did not do it sooner. You twisted my words around but that's not uncommon for someone in the medical profession. It's not worth the argument. If your both a sufferer and a doctor then I'm sure you've heard the expression "Physician heal thyself"!

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I misspoke when I wrote that there is no good evidence for apple cider vinegar helping with PN. I meant to say helping with high cholesterol. Sorry for the confusion. It was certainly not intentional.

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@jacquespierre

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?

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Thank you for the correction.

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@johnbishop

I chose not to take statins for lowering my cholesterol because I already have neuropathy and just didn't want to chance making it worse. I would rather work on lowering the numbers by lifestyle changes. Also, my numbers really weren't that high when my primary care doctor wanted to start me on them. I really think a person has to weigh the risks and have a discussion with their doctor. Mayo Clinic has some good information on weighing the risks. I also ran across some interesting side effects of statins while researching..

Mayo Clinic - Statin side effects: Weigh the benefits and risks
-- https://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/in-depth/statin-side-effects/art-20046013

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.aspxAw

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I agree with trying alternate methods first before medications. One thing to ask yourself when taking medications, do the benefits outweigh the risks? I currently do not take any medications. When I have no choice I will take medications but first I always try other methods like foods or supplements for health improvements. I have neuropathy on my left side of my body as a result of a surgical repair for a ruptured AVM. The numbness, burning, and tingling feels more prevalent on my left leg from my knee to my foot and my left hand. Sometimes the intensity of the pain decreases. I have had this condition for 2.5 years now. The surgeon at the time told me it would go away. I do not want to take gabapentin or neurontin. There are always side effects of medications and prefer not to deal with any more issues. Has anyone tried the Lion’s Mane Mushroom? The supplement sounds promising to help with neuropathy and nerve cell growth.

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@jacquespierre

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?

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If not gabapentin, what do you take for your pain, may I ask? I have not tried Lions Mane mushroom, is it helpful?

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@jacquespierre

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?

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Hi @helennicola, I use natural inflammatories through foods I eat and supplements like turmeric. I deal with the pain. I have read reviews on Lion’s Mane Mushroom. It seemed to help people with neuropathy. I don’t know how long people were taking the supplement before getting good results. I would think it depends on the individual and degree of illness for it to help. I had heard about it by calling a major supplement company. Their sales representative told me his company did not carry a supplement that could help with neuropathy but he had heard of Lion’s Mane Mushroom. Studies were done to prove it had helped.

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@jacquespierre

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?

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The reviews on Lions Mane mushroom are very positive although like many alternative meds, have not been proven in humans. It is supposedly beneficial and preventative for many ailments and sounds like a sensible possibility to try.

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@helennicola

The reviews on Lions Mane mushroom are very positive although like many alternative meds, have not been proven in humans. It is supposedly beneficial and preventative for many ailments and sounds like a sensible possibility to try.

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Hi, @helennicola - sounds like you've been doing some reading and research on lion's mane mushroom. Thought it might be helpful for other members if you have links to any studies you've read and found informative about this mushroom you might post?

One study I noted in a quick search, conducted in rats, was "Neuroregenerative potential of lion's mane mushroom, Hericium erinaceus (Bull.: Fr.) Pers. (higher Basidiomycetes), in the treatment of peripheral nerve injury (review)." https://www.ncbi.nlm.nih.gov/pubmed/23510212

Also, here is another Connect discussion specifically on neuropathy and lion's mane, if you are interested https://connect.mayoclinic.org/discussion/lions-mane/

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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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Hello, Dr. Rapp, I am also a medical doctor, and during a fellowship in 1986, we performed EMG and nerve testing on test subjects taking either Mevacor (an early statin) or placebo, for eventual approval by the FDA. The eventual study demonstrated that 5% of patients on Mevacor (no longer in use, I believe) developed peripheral neuropathy, with none in the control group. I, too, am on Crestor and over the past few months I have started to develop symptoms of PN. Numbness over the toes and ball of the foot. Crestor was the first statin I have taken, and I do not have any other risk factors, to my knowledge. So I am going to ask my internist whether I might D/C this med, although it really did reduce my LDL cholesterol.

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