Statin discontinued due to neuropathy. What are some alternatives?

Thank you for subscribing and reading the magazine article and for
posting your thoughts here. My father lived to be 95 and he told me when I retired, “Son, keep moving or you will stove up and die.” Hopefully, he will get better with time. My guess is he is taking some type of blood thinners and/or Mediterranean Diet to extend his life span. Thanks again for your post.

I ended up subscribing to The Atlantic (which I’ve always considered doing) just so I could read that article. I was glad someone found a potential explanation, at least for the muscle pain from statins. It seems like some physicians are still so dismissive of the side effects, so much so there’s even been research about if people report muscle pain with statins because there’s so much awareness it’s a potential side effect.

But it seems reasonable to me to acknowledge that a powerful medication that alters how your body processes something can cause unintended consequences—even if it can be life changing for the better for many. It annoys me that many cardiologists and vascular neurologists (for stroke) are so robotic and committed to their recommendation and reliance on statins without always considering the individual in front of them.

My dad did not have a cholesterol problem, but his PCP put him immediately on the maximum dose of generic Lipitor because he has athlerosclerosis (probably from being a longtime smoker, but he quit a few years ago). We were told this is the “standard of care” in that situation but they didn’t take into account he has extreme sensitivity to medication and a strong family history of autoimmune conditions.

Until he was put on the statin, he had no chronic pain or other health problems (though the athlerosclerosis was a risk factor he would have definitely needed to address), but within months he started experiencing fatigue and muscle pain. The best case scenario would have been if it turned out to be statin induced myopathy.

But that’s not what happened. He developed an autoimmune inflammatory arthritis, polymyalgia rheumatica, that causes severe muscle pain and fatigue. It often occurs with another type of arthritis (giant cell arteritis) which is a high risk factor for stroke, and then he had a severe stroke.

Around the time he was diagnosed with PMR, we learned in a small number of people who are susceptible, statins are thought to have the potential to trigger an immune system response that can set off PMR. Of course, his PCP thought we were crazy, until we got him to a rheumatologist ourselves and she confirmed the diagnosis. Later, even his cardiologist was aware of the association between statins and arthralgias.

But of course…while he was in the hospital, the neurologist kept pushing pushing pushing about starting a statin. He was put on the maximum dose of Crestor, which caused acute liver damage! His liver function values doubled twice in two weeks. Now, that is a known side effect of Crestor. And 2 statins aren’t enough to qualify him as “statin intolerant,” but if it become necessary to take another cholesterol lowering medication, we’ll be looking at other options.

We will never know if the statin was the first domino or not; he had risk factors for both stroke (but who doesn’t at age 72?) and PMR. At the same time there easily was an argument that could have been made that he didn’t need a statin because his cholesterol numbers were and still are good.

I just wish the providers pushing and prescribing statins would have more humility about the potential side effects (some are, and we’ve found people more supportive and more aware of the nuance, but those who pushed them on my father initially were not).

I could not tolerate any of the statins. Recently put on Repatha and no problems or side effects in over a month. There is a recent article in Atlantic Magazine about Statins and a genetic disease that produces exact same symptoms. Researching Statins will tell you how dangerous they can be for some individuals.

I’ve looked into this too, and it seems there’s not “reliable” evidence linking neuropathy to statins, but it also seems to be a know thing that people in some cases experience/report:

According to stuff thatworks.org 16% of people with neuropathy reported worsening symptoms with statins.

I was put on a non statin drug called Nexlizet and my cholesterol is lower than ever. I could not tolerate the statins with y peripheral neuropathy and since the hot weather has arrived my feet and ankles seem to be getting worse.

My neurologist said she’s treated hundreds (maybe more) and statins have never been a problem. True?

I was on Lipitor following two TIAs.
My neurologist changed me to Livalo which is less likely to aggravate Peripheral Neuropathy.

I have no interest in taking a statin because almost everyone I know who has taken one has had significant side effects. Are use Benacol chews 4 a day, end it reduced my LDL by 30% in six weeks. And they taste really good.

I'm extremely sorry for what happened to you. On the other hand, from everything I've read, statins seem to be of net benefit for secondary prevention—for people like you who have already had a cardiovascular event. That doesn't necessarily make all of your suffering justifiable as you describe it, and if you choose to read for example, Dr. John Abramson's books, you'll see why I say this. The latest is called "Sickening: How Big Pharma Broke American Health Care and How We Can Repair It."
Many of us, I’ve come to realize, have suffered for years with serious adverse effects from a statin drug, usually a lipophilic statin drug, that we now know held essentially no proven benefit for us. You can look at photos on StatinStories.com, or go to one of the other websites people with statin side effects have created. There are many, many of us.
I'm not sure that at this point it matters whether there was or wasn't proven reason to prescribe, and sometimes push very hard, a statin drug on you or on me--in the end, as you say, we're "stuck with this condition" and suing the company for that won't make it go away. But if one needs money to pay for having to stop working or to pay for new health costs due to the adverse effects, yes, we should be able to sue-I believe it would make both our prescribing doctors and nurses and also the drug companies more honest and helpful. For example, my cardiologist, whom I told I was there for a second opinion on my need for statins, told me that they were so safe that some people think they should be in the water supply?
(You can find out if you wish what money or equivalent your doctor may have received from what pharmaceutical companies by going to Pro Publica's Dollars for Docs. I went, and like many others in our shoes, I was sickened again.

Perhaps even worse is the fact that you it seems, like me will not succeed in suing any generic drug manufacturer--not for failing to stay current on their warning labels; and not for defective drug design (what else is there?)--thanks to Supreme Court decisions in 2011 and 2013. (If I’ve said “worse”, it’s because SCOTUS makes decisions on lots of stuff that matters, and if you been reading the news in mid 2023, you know what’s going on.) You might sue a brand name drug, but of course, once their patent is expired and much cheaper generics are out, our insurance companies only cover the generics, and here you and I and millions of others are. One big difference brand name and generics involves ability to sue
Yes, our for profit health care system is broken, and many of us are victims of its deception and greed--we customers (patients) of course, but also our health care professionals. It must be pretty awful for them too.