1. < Neuropathy

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.

jeffrapp | @jeffrapp | Dec 17, 2019
In reply to @iceblue "@jeffrapp - Nicely said. I was considered a renegade in my younger years when I taught..." + (show)
@iceblue

@jeffrapp - Nicely said. I was considered a renegade in my younger years when I taught childbirth classes without being a medical practitioner. Silly me - I figured that having 2 - 4 children of my own and doing a lot of reading equipped me to do a better job than my local health unit - where our class full of first time mothers was told that we would experience 'some discomfort' while in labour. Not only did I learn that labour hurts like Hell - I also learned that being a medical practitioner did NOT equal 'all knowing'. Based on my own birthing experience, a critical component of my teaching to new mothers was: Do your own research and be an active partner in your health care.

I don't know if apple cider will lower cholesterol, but I agree that it is a choice and we should talk to our doctors if that's the route we want to go. Interestingly enough - I have been summoned to my new doctor's office because my cholesterol has been creeping up steadily over time. The only time it dropped was when I was on the Keto diet! I achieve ketosis very quickly/easily and I guess I could try that route again, but I am not interested in going back on that diet because it's so restrictive - so - I assume my doctor will want to talk to me about meds.... *sigh* Time to do some research on the subject!!!

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Thanks for the compliment, @iceblue.
I certainly agree that we all must be active participants in our own health care, without being dismissive of the experts.
Regarding statin use, I have done some more research regarding whether or not they can cause PN.
I found one paper from 1999 which claims they do. However, they were all case studies (not double blind placebo controlled) so they were not optimum. I also don't agree with the conclusions they drew from the info they presented.
Another paper from 2019 is a meta-analysis (literature search) which claims they don't.
I have small fiber neuropathy, so I am mostly interested in that diagnosis. All the cases that were in the first paper involve axonal neuropathies, which I don't have. The PN of those patients was irreversible.They also all involved long term use of statins. I believe someone posted here that he took statins for a few weeks and thinks he developed PN because of the statins, and when he stopped, the PN was "cured". I don't find that very convincing.
For myself, after not taking statins for 2 years, and seeing my PN progress, I decided to go back on them.
Who knows?

REPLY
2 replies
iceblue | @iceblue | Dec 18, 2019
In reply to @jeffrapp "Thanks for the compliment, @iceblue. I certainly agree that we all must be active participants in..." + (show)
@jeffrapp

Thanks for the compliment, @iceblue.
I certainly agree that we all must be active participants in our own health care, without being dismissive of the experts.
Regarding statin use, I have done some more research regarding whether or not they can cause PN.
I found one paper from 1999 which claims they do. However, they were all case studies (not double blind placebo controlled) so they were not optimum. I also don't agree with the conclusions they drew from the info they presented.
Another paper from 2019 is a meta-analysis (literature search) which claims they don't.
I have small fiber neuropathy, so I am mostly interested in that diagnosis. All the cases that were in the first paper involve axonal neuropathies, which I don't have. The PN of those patients was irreversible.They also all involved long term use of statins. I believe someone posted here that he took statins for a few weeks and thinks he developed PN because of the statins, and when he stopped, the PN was "cured". I don't find that very convincing.
For myself, after not taking statins for 2 years, and seeing my PN progress, I decided to go back on them.
Who knows?

Jump to this post

Many thanks for the additional info @jeffrapp ! I have only seen my new doctor once, but the intake to his clinic (conducted by a resident?) took a full hour. I couldn't believe how thorough they were! Upon getting the results of my blood tests, they called TWICE to request that I come back into the clinic to discuss blood test results (upward creeping cholesterol was the only thing out of range). I will chat with the doctor about any concerns he may have about statins impacting SFN, and am sure that he and I will build a good, solid relationship over time.

But - I think it's also time to step out of denial and conclude it's time to start making a serious effort to shed the pounds I put on when I quit smoking last year. And if I was completely honest - I was 20 pounds overweight even before that, so I'm packing around an extra 40 pounds and live the life of a slug (partially because of the pain in my feet), and - I eat more junk food than I should. It's time to make some changes to improve my own health - even if statins (which I've been nervous about for years) are part of that recipe...

REPLY
1 reply
jacksgarden | @jacksgarden | Dec 18, 2019
In reply to @dutchman09 "Has anyone here been diagnosed with Peripheral Neuropathy caused exclusively from orally ingesting a statin medication..." + (show)
@dutchman09

Has anyone here been diagnosed with Peripheral Neuropathy caused exclusively from orally ingesting a statin medication for 8 years? I have never had diabetes or high Cholesterol.

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I have had neuropathy for the last 14 years. The doctors only gave me pills that are not helping. I would like to have a stem cell done but I cannot afford it. It seems that the pain is getting worse. Yesterday I must of yelled 10 times the pain was so bad.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Dec 18, 2019
In reply to @jacksgarden "I have had neuropathy for the last 14 years. The doctors only gave me pills that..." + (show)
@jacksgarden

I have had neuropathy for the last 14 years. The doctors only gave me pills that are not helping. I would like to have a stem cell done but I cannot afford it. It seems that the pain is getting worse. Yesterday I must of yelled 10 times the pain was so bad.

Jump to this post

@jacksgarden, I'm sorry to hear you are in so much pain. The problem with stem cell therapy for neuropathy is that I don't believe it's there yet even though there is a lot of advertising about it. I've only heard of some success when treating diabetic neuropathy. Here's more information from the International Society for Stem Cell Research (ISSCR):
-- http://www.closerlookatstemcells.org/stem-cells-and-medicine/nine-things-to-know-about-stem-cell-treatments
-- http://www.closerlookatstemcells.org/stem-cells-and-medicine/stem-cell-treatments-what-to-ask

You might find the following discussion helpful as you are not alone in your search for something to provide relief from the pain.

> Groups > Neuropathy > Ideas for pain relief from Small Fiber Neuropathy (SFN)
-- https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/

Hope you find something that helps ease your pain...

REPLY
dutchman09 | @dutchman09 | Dec 18, 2019
In reply to @jeffrapp "Thanks for the compliment, @iceblue. I certainly agree that we all must be active participants in..." + (show)
@jeffrapp

Thanks for the compliment, @iceblue.
I certainly agree that we all must be active participants in our own health care, without being dismissive of the experts.
Regarding statin use, I have done some more research regarding whether or not they can cause PN.
I found one paper from 1999 which claims they do. However, they were all case studies (not double blind placebo controlled) so they were not optimum. I also don't agree with the conclusions they drew from the info they presented.
Another paper from 2019 is a meta-analysis (literature search) which claims they don't.
I have small fiber neuropathy, so I am mostly interested in that diagnosis. All the cases that were in the first paper involve axonal neuropathies, which I don't have. The PN of those patients was irreversible.They also all involved long term use of statins. I believe someone posted here that he took statins for a few weeks and thinks he developed PN because of the statins, and when he stopped, the PN was "cured". I don't find that very convincing.
For myself, after not taking statins for 2 years, and seeing my PN progress, I decided to go back on them.
Who knows?

Jump to this post

A so-called Cardiologist had me on Crestor for 8 years and now I have confirmed Peripheral Neuropathy for which there is NO CURE!

REPLY
1 reply
iceblue | @iceblue | Dec 18, 2019
In reply to @dutchman09 "A so-called Cardiologist had me on Crestor for 8 years and now I have confirmed Peripheral..." + (show)
@dutchman09

A so-called Cardiologist had me on Crestor for 8 years and now I have confirmed Peripheral Neuropathy for which there is NO CURE!

Jump to this post

Did someone tell you that Crestor was responsible for the PN? Or - is it a potential risk of the med?

REPLY
iceblue | @iceblue | Jan 17, 2020
In reply to @iceblue "Many thanks for the additional info @jeffrapp ! I have only seen my new doctor once,..." + (show)
@iceblue

Many thanks for the additional info @jeffrapp ! I have only seen my new doctor once, but the intake to his clinic (conducted by a resident?) took a full hour. I couldn't believe how thorough they were! Upon getting the results of my blood tests, they called TWICE to request that I come back into the clinic to discuss blood test results (upward creeping cholesterol was the only thing out of range). I will chat with the doctor about any concerns he may have about statins impacting SFN, and am sure that he and I will build a good, solid relationship over time.

But - I think it's also time to step out of denial and conclude it's time to start making a serious effort to shed the pounds I put on when I quit smoking last year. And if I was completely honest - I was 20 pounds overweight even before that, so I'm packing around an extra 40 pounds and live the life of a slug (partially because of the pain in my feet), and - I eat more junk food than I should. It's time to make some changes to improve my own health - even if statins (which I've been nervous about for years) are part of that recipe...

Jump to this post

I saw my doctor today. He provided info I was not quite prepared for! He believes I have a genetic cholesterol issue. After discussing my family issues related to heart attacks and strokes, and my cholesterol numbers and patterns over time - I agreed to try Crestor.

In terms of 'Do statins cause PN?' I'm not sure about that as I had SFN before starting the statins - but I will definitely be watching to see if my SFN gets worse.

REPLY
tcokeefe | @tcokeefe | Jan 18, 2020
In reply to @jacquespierre "I have been taking cholesterol medication for the last 20 odd years and a year ago..." + (show)
@jacquespierre

I have been taking cholesterol medication for the last 20 odd years and a year ago I was diagnosed with PN... burning, numb, painful lower legs and feet... no doctor or neurologist seems able to help me so I have decided to make peace with the fact that my condition cannot be cured. Can anyone tell me if there is any natural cholesterol medication I can use in stead of the chemical one that contains the harmful statins? Will it improve my condition if I stopped taking the chemical cholesterol medicine?

Jump to this post

I developed PN almost 20 yrs ago - I also have had lifelong high cholesterol My doctors have badgered me to take statins forever (although I have always felt they weren't the great silver bullet and probably would prove to have long term downsides, as they have) and I have tried several, and each and every time they made my neuropathy worse. I am sure it is different for everyone and my sister tolerates statins fine and has been on them forever. One surprise though - I had a heart cath last year to check my arteries, which everyone assumed would be blocked due to my off-the-chart cholesterol for decades - guess what? They were wide open! and my calcium score was -0-! I attribute it to oatmeal!! Good luck!

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Mentor
John, Volunteer Mentor | @johnbishop | Jan 19, 2020

@nukhan my doctor wanted me to take a statin to lower my cholesterol but I decided to work on my diet and exercise more to see if I could lower the bad and raise the good cholesterol. My numbers were a little better the last time we checked but my next appointment in March I'm hoping they are still OK. Here's a site that gives a few tips...

How to Lower Cholesterol with Diet -- https://medlineplus.gov/howtolowercholesterolwithdiet.html

On the bright side of taking statins....Statins Have Unexpected Effect on Pool of Powerful Brain Cells
-- https://www.urmc.rochester.edu/news/story/2051/statins-have-unexpected-effect-on-pool-of-powerful-brain-cells.aspx

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1 reply
maryv449 | @maryv449 | Jan 19, 2020

I think that is when my neurapathy started with the statin, I did the gamut of them and all they did was make my bones and muscles ache. So, I quit them on my own but it was too late to stop the burning feet.

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