Statin discontinued due to neuropathy. What are some alternatives?

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

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

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 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).

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).