Statin discontinued due to neuropathy. What are some alternatives?

Posted by Nazir Khan @nukhan, Jan 19, 2020

I have been using Lipitor since 2007 for lowering my cholesterol which is on the list of those medicines that are suspected to cause neuropathy. I am thinking of discontinuing this menace but before doing so want to check with those members who have discontinued using statin and what is their experience. What alternative methods have they since adopted for lowering their cholesterol .. diet, alternative medication, exercise or anything else ?

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That’s what my dad was prescribed post-stroke in the hospital and within two weeks he had acute (so temporary when the meds were stopped) liver damage.

I’m so sorry this happened to you.

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@emo

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).

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Thats eye opening. Thanks for the share.

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@daniel777

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.

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I exercise every day and have multiple health issues. One is PN. I believe to that keeping active is the key to better health! Plus, faith in God!
I have lost over 35 pounds. My doctor agreed to decrease my Liptor from 20 to 10 mg per day! Hopefully, I can come off it all together.
God Bless and hope this helps. Pat

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I developed peripheral neuropathy after a years use of the statin Atorvastatin. This is not uncommon iI have discovered and I am so hoping that with time I shall recover having stopped the statin.

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@oliviaflickamay

I developed peripheral neuropathy after a years use of the statin Atorvastatin. This is not uncommon iI have discovered and I am so hoping that with time I shall recover having stopped the statin.

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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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@daniel777

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, 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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@daniel777

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'm still suffering from terrible Statin caused neuropatjy. Fearful that the damage may be lifelong.

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I have read many comments on this list about statins effecting PN. Anecdotally, I don't have the same experience. I have been taking simvastatin since the late eighties after a triple By-pass and I I know it has helped to clean out some of my arteries as over the years my carotid arteries have gotten a lot less clogged according to tests. I do have some minimal joint pain for which I am taking some turmeric supplements which are of questionable value. My joint pain is very slight and I have put it down to old age, I am 81. When I hit 80 so much changed that I hesitate trying to identify a cause.

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@daniel777

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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Thanks, I'll look into this at my next Dr's visit.

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@domiha

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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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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