Statin discontinued due to neuropathy. What are some alternatives?

Oh, I do plan to stay on the Repatha.... and the Vascepa. And I'm taking Zetia, also. But I still wonder if there is something else that statins do that none of these other drugs do.... to reduce cardio events. If not, why are doctors so hung up on statins? Then again, maybe big Pharma plays a role in pushing the statin hype!?? Be well! Mike

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.

@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

Thanks for that info, I will keep it in mind but will have to check out side effects. Niaspan is an extended release form of nicotinic acid and it does have efficacy but many believe the immediate release has greater efficacy. Yes, I do get the flush and, as I said, I am one of those people who actually like it. It fades with continued usage. I do not think it is a good idea to try to suppress it as you may at the same time diminish its efficacy. Niacin, unlike statins, boosts HDL-C and does not contribute to neuropathy; in fact may help prevent it.

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.

Well my brother-in-law had foot neuropathy and they attributed it to his cholesterol meds. I take the minimum dose of 20mgs, but you are taking twice as much. Everyone is different with different reactions.
If I were you, I’d talk to my doctor about statins.
A year later, I still have the feet only neuropathy, just the bottoms of my feet but it hasn’t got any worse. So I can tolerate it with nighttime gabapetin.
Personally I think it’s worth trying any change assuming you are not diabetic.
Vince

Many years ago my doctor prescribed a couple of different statins and everything caused severe muscle pain. I tried a very low fat diet and my cholesterol levels actually went up! Apparently, my liver produces more if I don't eat it. More research...took red yeast rice. It actually worked with no pain. But the longer you take it, the less effective it is. Stopped RYR for a while, and went back several times. All this time my old doc and now the new one is asking me to take statins. Not going to do it. Now, I'm reading that RYR "may" be the same as a statin. I developed neuropathy in my feet about 2.5 years ago. They are blaming it on my diabetes, although my A1c has never been out of control. About 6. But the last 2 tests have been 5.8.
Now, I'm going to stop RYR. More research. Found policosanol. There are actually NIH studies on this supplement. Google policosanol. I haven't started it yet, but from what I've found, looks promising for lowering cholesterol.
I've also heard, garlic, psyllium fiber and citrus bergamont might be helpful. I don't have any illusions any of this will get rid of the pain in my feet, but I am hoping it won't get worse.
Sorry this is so long and this is only my experience.

Diet is huge. I would eat more whole foods as much as possible. We have become a society of fast food and tv dinners. Hardly anybody cooks at home anymore.

My cardiologist talked with me about the possibility of changing to Nexlizet if I have problems with the statins.
This may be something to discuss with your doctor if statins are causing a problem.
https://www.nexlizet.com/
Mike

I am on Nexletol (bempedoic acid without the Zetia). It is working, and I have not experienced any side effects. If you go on it, do not go on Cipro or similar anti-biotics. It can cause tendon issues.

My only problem with Nexletol is the cost and my insurance company. Requires prior authorization…and the cost is still high after insurance pays for it.

All the best…🙏🙏🙏