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, @dutchman09 – wanted to let you know I moved your post on statins and neuropathy here so you could meet @marymaurer @wayno1234 @johnbishop @lorirenee1 @jacquespierre @crshowers, who have discussed this potential issue and may have some input for you on this connection or on your move from a statin to taking apple cider vinegar. @jimbotch also may have some thoughts for you.

Does your doctor think that being off the statin or taking the vinegar is making the most impact on your cholesterol at this point, dutchman09? Is your neuropathy any different after discontinuing the statin?

marymauer – Has the loss of feeling in your feet and lower legs continued? How are you doing?

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Have been off the statins for about 3 months. Still numbness in feet and lower legs.. no better but no worse. Would be interested to see if the apple cider vinegar is helpful with cholesterol!
Mine isn’t real high but I did have a partially blocked artery many years ago and have been on high dosage statin for past twenty years. Numbness slowly developing starting with the Sock under toes feeling. Not totally numb.. kind of like John describes his.

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If you'd like to read up on the Apple Cider Vinegar you can go to https://www.google.com/search?q=braggs+apple+cider+vinegar&ie=utf-8&oe=utf-8&client=firefox-b-1. But read the directions carefully and also the reviews. It hasn't 'damaged' me in any way so I continue to take it until I find another Cardiologist that's not into 'pushing drugs'! My main problem is my balance. After extensive research and several doctor and Chiropractor visits I've realized that the Myelin Sheath surrounding the peripheral nerves in my feet have been damaged by taking a statin. Therefore it takes the signal that tells my brain where 'in space' my feet are at any given time too long which causes the imbalance. As far as a cure for PN…the doctors cop-out is that "everyone is different" which absolves them from making any definitive statement about the drugs or the 'cure'.

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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 Welcome to Connect. I appreciate your input. I don't have small fiber neuropathy, and my experience is with physical compressions that cause nerve issues (thoracic outlet syndrome), and my experience of working through this has been mostly physical therapy with myofascial release. I am also a Mayo spine surgery patient (cervical stenosis). If you haven't tried MFR before, you might want to meet @artscaping who told us about how much MFR helped her neuropathy in her feet. MFR helps me a lot with the TOS and I self treat at home. I'm sure it helped my spine surgery by keeping the tissue supple so it could be easily moved during surgery, and after to loosen tight fascial scar tissue. MFR also helps by restoring fluid circulation to dehydrated compressed tissues, and the fascia converts from a semi solid state to a liquid crystal state when the tissue begins to slide and move again. This is called the "interstitium" in current literature. I found some literature about the role of alpha lipoic acid and glutathione and a deficiency of it in diabetics that leads to neuropathy and I had posted that in another discussion. I thought it might be of interest to you. We also have a discussion with a lot of information about MFR at this link. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Here is a quote from the article, The Roles of Oxidative Stress and Antioxidant Treatment in Experimental Diabetic Neuropathy.
https://diabetes.diabetesjournals.org/content/46/Supplement_2/S38
"we posit that lipid peroxidation causes mitochondrial DNA mutations that increase reduced oxygen species, causing further damage to mitochondrial respiratory chain and function and resulting in a sensory neuropathy, α-lipoic acid is a potent antioxidant that prevents lipid peroxidation in vitro and in vivo. We evaluated the efficacy of the drug in doses of 20, 50, and 100 mg/kg administered intraperitoneally in preventing the biochemical, electrophysiological, and nerve blood flow deficits in the peripheral nerves of experimental diabetic neuropathy, α-lipoic acid dose- and time-dependently prevented the deficits in nerve conduction and nerve blood flow and biochemical abnormalities (reductions in reduced glutathione and lipid peroxidation). The nerve blood flow deficit was 50% (P < 0.001). Supplementation dose-dependently prevented the deficit; at the highest concentration, nerve blood flow was not different from that of control nerves. Digital nerve conduction underwent a dose-dependent improvement at 1 month (P < 0.05). By 3 months, all treated groups had lost their deficit. The antioxidant drug is potentially efficacious for human diabetic sensory neuropathy."

Also this link has an easy to understand explanation of the roles of antioxidants and disease.
https://drhyman.com/blog/2010/05/19/glutathione-the-mother-of-all-antioxidants/
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
I have admiration for the good doctors who have changed my life and make a point of expressing my gratitude to them. With my spine condition, I was able to figure out what several spine surgeons were missing in my case by reading medical literature, and I brought that to a surgeon at Mayo. I knew that if I turned my head, I could turn pain on and off in my legs and body because of the pressure on my spinal cord. As that problem got worse, I wasn't able to turn off the pain anymore, but changing my neck position changed the distribution of the pain. I understand what I read because of my biology background and also having studied anatomy in art school, so I can visualize and understand 3 dimensional physical issues. I also am a patient of good physical therapist who teaches me a lot, and an environmental medicine doctor. As a patient, it helps me to know that doctors are human and that they feel the same things that I do when they are patients, and that makes me feel more comfortable in whatever I'm facing. When I was facing something fearful, like spine surgery, I asked my environmental MD if he was afraid when he had his heart surgery, and he told me yes, and it helped me to know that.

Here is my Mayo patient story. https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

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I don’t think anyone suggested apple cider vinegar for peripheral neuropathy. The discussion was re: lowering cholesterol. I for one am not content to wait for convincing scientifically proven evidence while my neuropathy worsens. I too think it involves statins and I also know that there may be other ways to address cholesterol. I appreciate every post on this list and would like to hear if something helps someone.. ..even if it involves an “n of one”!

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I never meant to suggest that Apple Cider Vinegar has any connection to PN. I started using Apple Cider Vinegar approximately 4 months ago and without any other medication toward high cholesterol my numbers have stayed constant. Anything that comes close is better than a statin!

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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'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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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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