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.

John, Volunteer Mentor | @johnbishop | Jul 31 5:42pm

In reply to @rdavis1018 "@johnbishop I have only recently I’m aware that there is a serious issue of 50% of..." + (show)

Hello @rdavis1018, Welcome to Connect. I think it's best to discuss it with your doctor before stopping taking the statin. I did have a long discussion with my doctor several times about the neuropathy side effects of statins and told her I would rather work on my cholesterol numbers through lifestyle changes since I already had neuropathy and didn't want to make it any worse. I'm not sure which statin you are on but you might find this related discussion helpful:
-- Statins that won't cause/worsen neuropathy: https://connect.mayoclinic.org/discussion/statins-that-wont-causeworsen-neuropathy/

rdavis1018 | @rdavis1018 | Jul 31 6:00pm

In reply to @johnbishop "Hello @rdavis1018, Welcome to Connect. I think it's best to discuss it with your doctor before..." + (show)

@johnbishop yes I’m aware that there are serious issues with suddenly stopping statins so I’m not going to do that. I plan on contacting them on Monday to make an appointment to see if she could possibly switch me to something. That’s not a statin or if we should just gradually take me off of it and I can try dietary and changes an exercise as an alternative

gus0557 | @gus0557 | Jul 31 6:46pm

In reply to @rdavis1018 "@johnbishop I have only recently I’m aware that there is a serious issue of 50% of..." + (show)

@rdavis1018
Hello,
Just letting everyone know there are non-statins now available by prescription only. You need to ask your primary physician about that. However, just keep in mind like with all medications, it may or may not work for you.
Take care and have a serene weekend,
gus

lzimms | @lzimms | Aug 1 10:26am

In reply to @rdavis1018 "@johnbishop I have only recently I’m aware that there is a serious issue of 50% of..." + (show)

@rdavis1018
It might be worth googling “CholestOff reviews”, an over the counter supplement by Nature Made. My husband used it after experiencing dementia-like symptoms from statins and CIDP from Repatha. He no longer needs anything and his numbers are acceptable.

galliganwirth | @galliganwirth | Aug 1 5:58pm

Can anyone recommend a source or research connecting taking statins with development of neuropathy? I am surprised and disappointed not
to be advised by a physician treating me for PN with
PT that I should also address statins which I have been prescribed for many years.
Thanks in advance to anyone who can offer a direction to look into.

Justin McClanahan, Moderator | @JustinMcClanahan | Aug 4 9:10am

It is important to remember that all of us tolerate medications differently which makes it important to share how we are feeling on a medication with our providers. As with any medication, there are benefits and risk factors that have to be taken into consideration for each and every patient. From Mayo Clinic:

"When thinking about whether you should take statins for high cholesterol, ask yourself these questions:

Do I have other risk factors for heart and blood vessel disease?
Am I willing and able to make lifestyle changes to improve my health?
Am I concerned about taking a pill every day, perhaps for the rest of my life?
Am I concerned about statins' side effects or interactions with other medicines?

It's important to consider your medical reasons, personal values, lifestyle choices and any concerns when choosing a treatment. Talk to your healthcare professional about your total risk of heart and blood vessel disease and personal preferences before making a decision about statin therapy."

- https://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/in-depth/statins/art-20045772

For most patients, the limited risk factors and side effects don't outweigh the risk factors of the heart and/or cholesterol issues. If you have concerns about statins, it is best to discuss them with your medical provider to weigh your options.

njx58 | @njx58 | Aug 4 11:13am

Nonsense.

followheart87 | @followheart87 | Aug 5 6:49am

I was on a statin briefly perhaps 20 years ago and didn't tolerate it. Had severe GI issues. My doctor discontinued it and told me to try red yeast rice. I've been on red yeast rice ever since then. I buy it from a reputable company and it has CoQ-10 in it rather than buying off the shelf in Walmart.

I also take Cholestoff, an OTC plant sterol/stanol supplement which has been proven in trials to help lower cholesterol.

I also minimize my saturated fats and do not eat any junk food or sweets.

My cholesterol tests are always on the borderline side even with these supplements but I have no cardiac risk factors. Everyone's situation is different. A friend of mine has numbers similar to mine and she's on a statin but she also had a cardiac calcium score that was elevated whereas mine was zero. Everyone is different.

amanancy | @amanancy | Aug 5 3:03pm

In reply to @rdavis1018 "@johnbishop yes I’m aware that there are serious issues with suddenly stopping statins so I’m not..." + (show)

@rdavis1018 There are shot alternatives to the statin pills. Some have the bad side effects from the pills, but are without the side effects from the injections. You might want to ask your doctor about that too.

jaxy08 | @jaxy08 | Aug 10 3:33pm

In reply to @vogie "I am a 69 year old female who has always had a normal BMI and a..." + (show)

@vogie

I am a 69 year old female who has always had a normal BMI and a good fitness level. My labs have always been completely normal except for the lipids. I am on the athletic side. I am a life long exerciser. The only prescriptions I have ever taken on a regular basis are for HRT, which I started in my early fifties and continue to take.

I have resisted my doctor's urging me to take statins for years, as I have very high cholesterol. Male family members have taken statins and continue to take them while enduring long term muscle pain and muscle wasting. My father died at 53 from a heart attack, and his father at 60-so I can understand their risk/benefit analysis.

I was finally bullied into starting statins by my husband and several doctors last year. I started Rosuvastatin in March 2024 and experienced crippling muscle pain in my legs the following summer. I was eventually switched to Atorvastatin . Within 2 weeks of starting this statin I developed neuropathy in my hands and feet which greatly interfered with my sleep. On one day only, I experienced the tingling all up and down both arms and legs as well. This was a ghastly and very frightening experience. The neuropathy has been intermittent since, and limited to my hands and feet with an odd shooting tingly in other random spots, very occasionally.

Doctors dismissed the muscle pain and the neuropathy as extremely likely to be unrelated to the two statins. One said that there is absolutely no evidence that either statin causes these conditions. I feel like I am being gaslighted.

I discontinued the second statin. I was also starting to see my glucose numbers rise, but they were still in range

Now I am taking Repatha for cholesterol and gabapentin for the nerve pain. I see a neurologist for the nerve pain and will be undergoing further testing. She prescribed the gabapentin. I am taking 300 mg at bedtime. The worst side effects from these are fatigue, though I do get tremendously good sleep since starting the gabapentin-which is why she prescribed it. The gabapentin makes me very relaxed and limits my interest in exercising, although I am much calmer and less type A than I was prior.

My glucose A!c hit 6 on my blood work last week. I was consistently in the mid 5s for many many, years prior to starting stains and Repatha. I have read that medication induced diabetes may be irreversible, and I find that very scary. My energy levels are quite low and my weight has been rising rapidly. I am up from 135 to 153 since March 24. I am 5'2. None of my clothes fit and my lifelong motivation to exercise has waned.

Now the doctor in cahoots with my husband are recommending Zepbound for weight loss and blood sugar control.

I am thinking I would rather stop all these medications and just live with high cholesterol.

Anyone with similar experience?

Jump to this post

@vogie I’m so glad I found your post. I was experiencing the exact same symptoms as yourself. The pain and tingling in my feet , legs and hands have been intolerable. Like you I have kept very active and walk at least 5 miles every day but I am now having to have breaks in my keep fit. I decided that I would stop the statin. I am only on my second day so hopefully I will start to feel better. Hopefully you are well in your way to feeling a little better. X

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