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 ?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Profile picture for ericd47 @ericd47

I started statins in 1986 when my doctor detected cholesterol level of 380. Tried every statin and always got to level 2 pain. My current cardiologist was involved in the Repatha study and eventual prescribed it for me. Self injector, once every two weeks. After my first two months and a test by my cardiologist, I received a note from his nurse with a little heart sticker - cholesterol level below one hundred. Love it. I did talk to the cardiologist about my DPN and he researched the study findings and could not find any info re adverse effects. Just have to remember that DPN is a one in 300,000 disease - perhaps none had high cholesterol.

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Great. Thanks for sharing Repatha.

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Profile picture for martyk @martyk

Because of the side effects I get from statins like pain in the calf muscles, I reduced the Rosuvastatin to 5mg every 4th day. My cardiologist insisted I take it every day. But, he's not the one experiencing the pain. I had lab work done yesterday and I see the PCP in 2 weeks for my annual physical. We'll see what my cholesterol is then. I don't see the cardiologist for about 3 months.

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I started statins in 1986 when my doctor detected cholesterol level of 380. Tried every statin and always got to level 2 pain. My current cardiologist was involved in the Repatha study and eventual prescribed it for me. Self injector, once every two weeks. After my first two months and a test by my cardiologist, I received a note from his nurse with a little heart sticker - cholesterol level below one hundred. Love it. I did talk to the cardiologist about my DPN and he researched the study findings and could not find any info re adverse effects. Just have to remember that DPN is a one in 300,000 disease - perhaps none had high cholesterol.

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Profile picture for John, Volunteer Mentor @johnbishop

Welcome @donclemdds, It sounds like you have a similar plan to what I'm trying. That's really good advice to work with your PCP on a plan. My PCP also wants me to go on a statin due to my numbers even thought I've been working on weight loss with intermittent fasting, low carb and healthy fat diet plus 30 to 45 minute exercise daily also. I have an appointment in a couple of weeks and I'm sure we will have the conversation again but I'm not taking a statin at this point. My latest Triglicerides were 77, HDL 59, LDL 107, Non HDL-c 122. I also had them do a fasting insulin test and it was 7.4 and there's debate on what is good for that. The only positive thing I know is losing the weight will help my overall health.

I'm more worried about making my small fiber PN worse with the statins than I am about the possible effects of not being on a statin to lower my cholesterol when that has been shown that diet and exercise also works to lower your numbers.

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I had good luck with the FODMAP diet. Lost 60+ lbs over 6-9 months. Still on it somewhat and haven’t put any weight back on.

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Profile picture for martyk @martyk

Because of the side effects I get from statins like pain in the calf muscles, I reduced the Rosuvastatin to 5mg every 4th day. My cardiologist insisted I take it every day. But, he's not the one experiencing the pain. I had lab work done yesterday and I see the PCP in 2 weeks for my annual physical. We'll see what my cholesterol is then. I don't see the cardiologist for about 3 months.

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I used to be on statins and every year I had to change brands because of body aches. I refused to take them when my cardiologist tried to prescribe them again. I ended up on Metoprolol and ezetimibe (one is for cholesterol and one is for blood pressure (I forget which)).

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Because of the side effects I get from statins like pain in the calf muscles, I reduced the Rosuvastatin to 5mg every 4th day. My cardiologist insisted I take it every day. But, he's not the one experiencing the pain. I had lab work done yesterday and I see the PCP in 2 weeks for my annual physical. We'll see what my cholesterol is then. I don't see the cardiologist for about 3 months.

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Welcome @donclemdds, It sounds like you have a similar plan to what I'm trying. That's really good advice to work with your PCP on a plan. My PCP also wants me to go on a statin due to my numbers even thought I've been working on weight loss with intermittent fasting, low carb and healthy fat diet plus 30 to 45 minute exercise daily also. I have an appointment in a couple of weeks and I'm sure we will have the conversation again but I'm not taking a statin at this point. My latest Triglicerides were 77, HDL 59, LDL 107, Non HDL-c 122. I also had them do a fasting insulin test and it was 7.4 and there's debate on what is good for that. The only positive thing I know is losing the weight will help my overall health.

I'm more worried about making my small fiber PN worse with the statins than I am about the possible effects of not being on a statin to lower my cholesterol when that has been shown that diet and exercise also works to lower your numbers.

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Profile picture for gator123 @gator123

Does taking it three times a week keep your cholesterol in check I have been getting a lot of muscle issues tinnitus had gotten worse your fam

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Yes, the low dose suffices to lower my LDL to about 60

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Profile picture for tim1028 @tim1028

Jim--I've been taking 5 mg rosuvastatin, 3 times weekly for 3 months. I definitely get side effects, but they are less than with other statins. Some individuals do better with hydrophilic statins, like rosuvastatin, vs. lipophilic statins. I'm glad to hear that this statin and dosing are working for you.

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Does taking it three times a week keep your cholesterol in check I have been getting a lot of muscle issues tinnitus had gotten worse your fam

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Profile picture for MamaMarch @mamamarch

@jeffrapp, I'm new to Mayo Clinic Connect, just seeing this post and wanted to comment. I am in agreement with your take on the medical professionals, but I do see how people might feel "dismissed" after visiting their respective doctors. If I quote some of the things my neurologist has said, I can make him out to look dismissive, but, I can tell you he is NOT. Right now after some thorough testing, I've basically been told that I have polyneuropathy, some vitamins may help and it isn't likely to progress.
I wish that I could sit him down and discuss everything he knows and doesn't know about my exact condition; what he's learned from the research and from the hundreds of patients he's treated. I'd like for him to give me a detailed explanation of the terms used and results given on the tests I've taken. And I want him to explain to me exactly why he chose the diagnosis he did and his likely prognosis for progression of my particular disorder. Oh, and why the condition has so many variables.
But, that is really asking a lot. It would require having him over for dinner followed by several hours of discussion. And that's only because I have a decent background in anatomy and physiology. Otherwise, we might need a week-end together or maybe a semester of classes!
I've learned that I need to take on more responsibility for learning and understanding the details of my exact condition and it's status in the medical field. Basically, that's why I'm here! I want to pick the minds of those who know! So, if you're free for dinner, I still have a ton of questions, LOL!

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Hello @mamamarch, and welcome to connect.
Thanks for the dinner invitation!
Unfortunately, by this time, you probably know almost as much useful information about PN as I do.
Like many neurologic diseases, PN can be quite maddening. The diagnosis is complicated, the causes are often unknown, and the treatment is usually barely effective, at best.
Further complicating things, neurology has become a victim of the ridiculous way physicians are paid in this country. Ones who mostly think (internists, pediatricians, general practitioners, etc.) are paid much less than ones who do procedures (various surgeons, cardiologists, dermatologists, etc.).
I was a board certified ER doc. We used to have a semi-serious saying: "Don't just stand there thinking, do something". The procedures we did were much higher paying than our thinking.
Neurology is especially hit hard. Before MRI's, etc., all they did was make an often difficult diagnosis the old fashioned way, and then be left with almost no effective treatments. Now, with MRI's, most of the diagnoses are made with imaging studies, and there still are no very good treatments.
So, no, your neurologist is not likely to spend hours with you. He/she will likely feel rushed to see you in the short time allotted for your appointment, complete your chart, order your meds and tests, fill out ridiculous insurance and other forms, etc. These same dynamics likely apply to other specialists you see.
If you would like to read about a neurologist who somehow found the time to spend weeks and months with one patient, read the books by Oliver Sacks, who became famous after the movie "Awakenings", which was about one of his stories.

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Profile picture for jeffrapp @jeffrapp

I am both a sufferer and a doctor.
I have recently joined this forum, looking for an answer to this maddening disease. My diagnosis is idiopathic small fiber peripheral neuropathy.
With all due respect, I find posts such as the one by dutchman09 above to be unhelpful at best.
As far as I can tell, there is no definitive evidence that statins cause PN, although there is some evidence. I myself have taken statins for high lipids, but have stopped because of the possibility that they have contributed. When I discussed this with my MD, she was not dismissive, but pointed out that instead of suffering with PN, I may instead suffer from a stroke or heart attack. Chose your poison. It's complicated.
Almost all MD's I know do their best to provide validated information to their patients. They generally do not push medications, unless there is good scientific evidence of their effectiveness (as is true of statins). BTW, there is no good scientific evidence that apple cider vinegar works for PN. However, if it helps you, and doesn't hurt (which you may not realize for several years) go for it!
The doctor's do not "cop out" when there is no definitive cure. They simply do not know. They stopped being God a long time ago. My experience is that most MD's are quite open to trying new things (alternative medicine), when they do not have the cure.
Getting angry will only make you feel worse.

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@jeffrapp, I'm new to Mayo Clinic Connect, just seeing this post and wanted to comment. I am in agreement with your take on the medical professionals, but I do see how people might feel "dismissed" after visiting their respective doctors. If I quote some of the things my neurologist has said, I can make him out to look dismissive, but, I can tell you he is NOT. Right now after some thorough testing, I've basically been told that I have polyneuropathy, some vitamins may help and it isn't likely to progress.
I wish that I could sit him down and discuss everything he knows and doesn't know about my exact condition; what he's learned from the research and from the hundreds of patients he's treated. I'd like for him to give me a detailed explanation of the terms used and results given on the tests I've taken. And I want him to explain to me exactly why he chose the diagnosis he did and his likely prognosis for progression of my particular disorder. Oh, and why the condition has so many variables.
But, that is really asking a lot. It would require having him over for dinner followed by several hours of discussion. And that's only because I have a decent background in anatomy and physiology. Otherwise, we might need a week-end together or maybe a semester of classes!
I've learned that I need to take on more responsibility for learning and understanding the details of my exact condition and it's status in the medical field. Basically, that's why I'm here! I want to pick the minds of those who know! So, if you're free for dinner, I still have a ton of questions, LOL!

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