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 MamaMarch @mamamarch

I've attach a screen shot from some of my previous "research" that may help. There are some statins that are less likely to exacerbate the neuropathy. The best is expensive, so I choose rosuvastatin.
Your doctor will possibly resist because he or she doesn't believe the relationship between statins and neuropathy. Or may just feel that it's a choice between two issues and one is more deadly than the other. I was able to convince mine and she was very "cooperative" with my efforts. I read that very low doses of a statin are as effective if not more so than the normally prescribed dose. I reduced my dosage from 20mg to 10, then 5 and eventually down to 5mg every other day. This low dosage was able to keep my total cholesterol level right at 200, which was fine by me and acceptable to my doctor.
Another thing to seriously consider is supplementing with CoQ10 (or it's better form, Ubiquinol.) The should help to protect the nerves as well.
Just my thoughts, but seems to work well for me.

Jump to this post

Hello, can you give more information on the sources for the screen shot you posted?

thank you, roger

REPLY
Profile picture for MamaMarch @mamamarch

I've attach a screen shot from some of my previous "research" that may help. There are some statins that are less likely to exacerbate the neuropathy. The best is expensive, so I choose rosuvastatin.
Your doctor will possibly resist because he or she doesn't believe the relationship between statins and neuropathy. Or may just feel that it's a choice between two issues and one is more deadly than the other. I was able to convince mine and she was very "cooperative" with my efforts. I read that very low doses of a statin are as effective if not more so than the normally prescribed dose. I reduced my dosage from 20mg to 10, then 5 and eventually down to 5mg every other day. This low dosage was able to keep my total cholesterol level right at 200, which was fine by me and acceptable to my doctor.
Another thing to seriously consider is supplementing with CoQ10 (or it's better form, Ubiquinol.) The should help to protect the nerves as well.
Just my thoughts, but seems to work well for me.

Jump to this post

Thank you 🙏helpfull info.

REPLY
Profile picture for MamaMarch @mamamarch

Such a vicious cycle! I sympathize with your situation, but can't really say what I would do as I'm as unsure as you probably are. I do have a couple of comments to make. First . . . there is plenty of research showing that statins do exacerbate and or cause peripheral neuropathy. Shame on doctors for denying that. Mine gave me the line, "I have hundreds of patients on statins that don't have neuropathy."
Second . . . I volunteered for a DNA sampling program a few years ago and received a message back that I had a "defective gene". It was a gene that causes muscle pain due to the accumulation of certain medications; specifically statins! It is a thing! And I would guess it could run in families since it is a gene. Google it!
Lastly, for someone who now sees what happens when you start taking meds for one problem (only to need more meds to solve the issues created by the first one) I am surprised you accepted the gabapentin. I assume you were desperate, but with a bit of research into the subject, you might find solutions to some of the neuropathy issues without it. There is a lot of evidence that gaba is addictive and that it requires higher and higher doses to remain effective. I've read articles about people who went off gaba, literally going thru withdrawn pain, only to find later that once they were off most of the symptoms resolved. Just something to look into. Interestingly, my neurologist (and other doctors) keep offering me gabapentin even though I told them I do not have pain. I guess they just feel they're helping in some way if they can give you a medication.
Lastly, I still wonder just how damaging this so called "high cholesterol" really is as long as we stay heathy and active. I was ranging between 250 and 280 for about 25 years. Had a cardiac calcium scan done at age 68 and it showed zero occlusion in my arteries. I resisted the statins until my levels got up to almost 300. When I did start the rosuvastatin I was able to keep my total cholesterol down to 200 by taking only 5mg every other day! So, at that small dosage the muscle pain is mostly non existent now. I understand that the Repatha is much better in that respect as well.
Anyway, those are just my thoughts!

Jump to this post

Very insightful article. Thank you for the post!

REPLY
Profile picture for MamaMarch @mamamarch

I've attach a screen shot from some of my previous "research" that may help. There are some statins that are less likely to exacerbate the neuropathy. The best is expensive, so I choose rosuvastatin.
Your doctor will possibly resist because he or she doesn't believe the relationship between statins and neuropathy. Or may just feel that it's a choice between two issues and one is more deadly than the other. I was able to convince mine and she was very "cooperative" with my efforts. I read that very low doses of a statin are as effective if not more so than the normally prescribed dose. I reduced my dosage from 20mg to 10, then 5 and eventually down to 5mg every other day. This low dosage was able to keep my total cholesterol level right at 200, which was fine by me and acceptable to my doctor.
Another thing to seriously consider is supplementing with CoQ10 (or it's better form, Ubiquinol.) The should help to protect the nerves as well.
Just my thoughts, but seems to work well for me.

Jump to this post

Thank you so much for sharing and your helpful insights. I will keep this in mind as I’m talking with my primary care doctor. Thanks again!

REPLY

There are other PCSK9 inhibitors besides Repatha. I'm on Incliseran (brand name: Leqvio) which is a semi annual injection. It appears that Merck is coming out with PCSK9 inhibitor pill. I still take a very small dose of rosuvastatin to get my LDL to where my PCP wants it.

REPLY
Profile picture for MamaMarch @mamamarch

I've attach a screen shot from some of my previous "research" that may help. There are some statins that are less likely to exacerbate the neuropathy. The best is expensive, so I choose rosuvastatin.
Your doctor will possibly resist because he or she doesn't believe the relationship between statins and neuropathy. Or may just feel that it's a choice between two issues and one is more deadly than the other. I was able to convince mine and she was very "cooperative" with my efforts. I read that very low doses of a statin are as effective if not more so than the normally prescribed dose. I reduced my dosage from 20mg to 10, then 5 and eventually down to 5mg every other day. This low dosage was able to keep my total cholesterol level right at 200, which was fine by me and acceptable to my doctor.
Another thing to seriously consider is supplementing with CoQ10 (or it's better form, Ubiquinol.) The should help to protect the nerves as well.
Just my thoughts, but seems to work well for me.

Jump to this post

Just for the record, I have been taking Livalo for the last 10 years, and have developed a painful PN. Although before that, I took Zocor, Livolo, and Crestor for a total of 30 years. I think my Neuropathy is about 15 years old starting with just mild symptoms.

REPLY

Interesting about the minuscule amount of statin in RYR. I had read studies that showed how little of a stain is needed to reduce the cholesterol levels. One extreme example was a group of women in Japan that simply licked the tablet once a day! I'm sure that was an extreme. But, I did talk my doctor into letting me try less and less of a dosage. And I'll keep reducing it if the numbers stay at around 200. I'm a firm believer that we don't need our cholesterol any lower than that!

REPLY
Profile picture for njniii @njniii

I have been taking atorvastatin for a few years and my peripheral neuropathy (numbness in feet) has progressively gotten worse. Asking my primary care doctor what I should do.

Jump to this post

I've attach a screen shot from some of my previous "research" that may help. There are some statins that are less likely to exacerbate the neuropathy. The best is expensive, so I choose rosuvastatin.
Your doctor will possibly resist because he or she doesn't believe the relationship between statins and neuropathy. Or may just feel that it's a choice between two issues and one is more deadly than the other. I was able to convince mine and she was very "cooperative" with my efforts. I read that very low doses of a statin are as effective if not more so than the normally prescribed dose. I reduced my dosage from 20mg to 10, then 5 and eventually down to 5mg every other day. This low dosage was able to keep my total cholesterol level right at 200, which was fine by me and acceptable to my doctor.
Another thing to seriously consider is supplementing with CoQ10 (or it's better form, Ubiquinol.) The should help to protect the nerves as well.
Just my thoughts, but seems to work well for me.

REPLY

I have been taking atorvastatin for a few years and my peripheral neuropathy (numbness in feet) has progressively gotten worse. Asking my primary care doctor what I should do.

REPLY

I’ve tried all kinds of statins with severe myalgia and eventually neuropathy that was considered due to another drug. Went off all statins and tried supplements for the neuropathy which was only mildly effective. Trying to get docs to stop bullying for statins was the hardest thing. I finally said I would rather die younger than live with horrible pain—I’m 84 now

REPLY
Please sign in or register to post a reply.