Statin discontinued due to neuropathy. What are some alternatives?

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.

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!

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.

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.

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

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!

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?

If you have muscle aches due to a statin (not unusual) try a supplement called CoQ10. I use the Qunol brand which I get from Amazon.
If you want to quit statins altogether while keeping your LDL cholesterol under control there is a new class of drugs called PCSK9 inhibitors. I take incliseran (brand name, Leqvio) which is a subcutaneous injection every 6 months. The drug is expensive and your doc has to apply to your insurance and make a case as to why you need it. Merck is coming out with a PCSK9 inhibitor in pill form.

Eunice, if you can find either one of those classes nearby just do it! One time and you will be hooked, so motivating will not be a problem.
I am 75 and in a similar situation as you. I wish I could afford to join the YMCA for the water classes, but just can't. However, I joined a Chair Arthritis class and it is perfect. It doesn't deal directly with Arthritis, just generic movement. I wish I could make myself do it everyday, but need the motivation of a teacher and class, I guess. This is at a local Senior Center, which provides all kinds of activities. The chair workout is my favorite. Just seems like the right amount of movement without the stress of being on my feet and jumping around.
Try it, if you can find something nearby (if it's too far or too much trouble, I probably wouldn't commit.)

Hello @tbucksr, Welcome to Connect. Thanks for sharing what helps with your idiopathic neuropathy. If you haven't already seen the list of complementary and alternative therapies for neuropathy, the Foundation for Peripheral Neuropathy keeps a pretty comprehensive list that might be worth taking a look - https://www.foundationforpn.org/therapies/.

What are the symptoms that bother you the most?