Statin discontinued due to neuropathy. What are some alternatives?

I too suffer from extreme neuropathy up both legs and now starting in my thighs. I have stenosis in my lower back with pressure on a nerve. I use to get epidural injections but they no longer help. I also take gabapentin at nite. Thank you for sharing your zocor (simvastitin) experience. I take zocor 40mg a day. Guess it isn't the zocor. Boo. God Bless.

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We, my doctor and I, experimented with stopping simulvastin (zoccor)
for several months and tried zetia, a non-statin cholesterol drug. Nothing
changed so I went back to my statin. I don’t belive statins cause neuropathy.
I think the TKR surgeon most likely adversely damaged some nerves and neuropathy is a direct result of that surgery (for some folks). Unfortunately
the TKR surgeons NEVER inform the patient of these possibilities. It’s a crime, in my opinion, after learning so much from this group. Not sure of the long term outcome, do nerves regenerate? I since have a swollen groin lymph node in the same leg and tests indicate there is swelling but not anything out of the ordinary. However, the cause is unknown. I’ll have another test in the beginning of November to see if anything changed. Foot neuropathy can’t be explained from what I’ve learned after seeing a few other surgeons and a few neurologists, (except for diabetics). I’m learning to live with it for now. I take Gabapetin about 6pm because the discomfort usually occurs only at night.
Hopefully time will tell me more but I’m already two years post TKR, I’m slowly becoming doubtful at this point.
Best of luck to you.
Vince

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@proteusx Have you considered Repatha or Vascepa? The cardiologist put me on both of those as preventative. My cholesterol was controlled with the statin I was taking, but my HDL was never quite up to a desirable level. And my triglycerides were still on the high side. The Repatha lowered the LDL even further and increased the HDL to a good level. Then she added the Vascepa (Ethyl Icosapent) to help with the triglycerides, and it dropped them way down. I turn 73 this weekend, and like every other human I could be gone tomorrow, but it won't be for lack of trying to take the best care of my health that I can. I wish you success with the Niacin and I hope that it WILL have a positive effect on your PN. I've just read about the prescription Niastan that contains nicotinic acid. Something to bring up to my doctor when I next see him. Perhaps it would be more helpful than the Zetia. Do you experience any "flushing" from what you are taking! Best regards! Mike

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Before there were statins for lipid issues there was niacin. It has been extensively studied and used by hundreds of thousands of people with good lipid modulating results over many decades; and, unlike statins, it is not associated with peripheral neuropathy, rhabdomyolysis, etc. and, moreover, is one of the few substances that can increase the so-called "good cholesterol" HDL within favorable ranges, something statins can't do. (Recent headlines suggesting HDL-C might not be as beneficial as previously believed applies only to extremely high levels of HDL that only a tiny minority of people ever experience and is not an effect of niacin usage.) A couple studies in recent years claimed to find little benefit from niacin, but two of the researchers involved in those studies, which combined niacin with statins, wrote a two part rebuttal of their own findings, pointing out that niacin was used incorrectly in almost every way in those studies. It was far under-dosed, given at the wrong time of day (just before sleep and without meals) and in a form previously shown to be sub-optimal. The correct form for use is immediate release niacin in the form of nicotinic acid, not extended release and never "slow release" (which can be toxic to the liver as it stays in the system too long). And it should always be taken with meals for optimal absorption. It should never be taken just before bed on an empty stomach as the pharmacokinetics for niacin taken at that time are unfavorable. Some do not like the "niacin flush" and try to ameliorate it by taking aspirin, etc., but some of the research indicates this is not a good idea, as the flush itself is part of the therapeutic process and, in any event, in most people, it diminishes after a few weeks. Some actually report enjoying the flush; I am one of those peculiar people myself. In any case, niacin is emerging again as a substance with impressive pleiotropic effects that reach far beyond lipid modulation. One recent paper, for example, reports on what the authors call "niacin-mediated rejuvenation...of the aging central nervous system" through its
documented ability to restore myelination of aging cells, concluding that "niacin represents a safe and translationally amenable regenerative therapy for chronic demyelinating diseases" such as multiple sclerosis, Alzheimer's, Parkinson's, etc. A central feature of some forms of neuropathy is demyelination (e.g.,
CIDP: chronic inflammatory demyelinating polyneuropathy). So, in sharp contrast with statins, niacin, far from promoting PN, may help diminish it. My own situation involves idiopathic polyneuropathy in the lower legs, feet and hands, which I suspect relates to small vessel disease (in the complete absence of coronary artery plaque). I am currently trying niacin and a few other substances to determine results, applicable to my case. Incidentally, published case histories indicate statins should not be taken by anyone with Gilbert's Syndrome, as rhabdomyolysis may result; I have Gilbert's and had an acute episode of rhabdo after just a few weeks on statins; a certain number of people who do not have Gilbert's also suffer rhabdo, a very dangerous condition. This occurred several years ago, causing me to give niacin a try; my brother, who has a similar lipid profile (very high LDL-C) and has the same inherited Gilbert's also started on niacin at about the same time. After four months on daily dose of 2000 mg we both experienced very favorable lipid changes. Now, some years after I went off niacin, my LDL-C is (only recently) again very high and, with the advent of PN, I decided to try it again, this time for possible multiple benefits. Just an idea. Always consult with your doctor before starting any new medical protocol. Mine, fortunately, keeps an open mind and keeps up to date on the latest research findings, And, as all of you who suffer from PN know, "standard of care" is anywhere from non-existent to highly unsatisfactory in most cases. There are alternatives that need a lot more attention, and nicotinic acid, I submit, is one of them.

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Stay on the Repatha. There is no sense in going back to a statin if your cholesterol and LDL are good.

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I, too, have struggled with statins. I was first put on Lipitor about 30 years ago (I'm 72). After about 15 years, I began to have muscle cramps/pain in my legs and my doctor switched me to Crestor. I stayed on that for several years, then began to have similar symptoms. I was changed to Pravastatin (one of the oldest) about 10 years ago, and have been okay with that until I had back issues due to stenosis. After surgery to help the stenosis, I noticed that I had PN in my feet... just numbness and tingling.... and I was also having cramping and tightening of muscles in my calves. So I asked my doctor to switch me to Zetia, which is for cholesterol but is not a statin. He reluctantly did so, reminding me that "nothing" would protect me like a statin. I will have been on Zetia for 3 months when I see him for my 6-month check up in March, and I am curious to see what my cholesterol levels are. I am also on Repatha and Vascepa... which have each helped to decrease bad cholesterol and improve good cholesterol... and the Repatha cut my triglycerides in half. My leg pain is better since stopping the pravastatin.... but I may ask the doctor to let me try another of the older statins again when I see him in March... because there DOES seem to be an indication that statins prevent cardiovascular disease much more than other drugs. Lowering cholesterol is good.... but it seems that, alone, doesn't decrease the level of plaque build up like statins can. (Of course, I could get hit by a bus tomorrow and none of this would matter.😊) I won't know if changing the statin, again, will not cause the muscle pains unless I try a new one to see. I truly think that most of my PN symptoms are coming from residual compression issues in my lower spine. We each try our best to take care of our health, but there are so many factors that enter in. And I don't know that one doctor can have ALL the knowledge. I learn a lot from other patients here in these groups.... and I have always felt that we have to be advocates for our own health... and bring up new treatments/meds with our doctors. Best wishes to all. Mike

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I was intolerant to every statin I tried…..then I was put on Repatha….lowered my cholesterol in half and absolutely no muscle aches or neuropathy! An amazing drug for myself and wife uses it too.

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I was intolerant to every statin I tried…..then I was put on Repatha….lowered my cholesterol in half and absolutely no muscle aches or neuropathy! An amazing drug for myself and wife uses it too.

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