My husband’s story is similar. He was on atorvastatin for about 20 years (prescribed after heart attack at age 47, with familial hypercholesteremia.) He was not instructed to supplement with CoQ10. He developed peripheral sensory neuropathy within a couple of months of taking the statin. He switched to Repatha about four years ago. He is now supplementing with CoQ10, no vitamin E, though. I was wondering about bempedoic acid, as well, but have the same concerns. Have you encountered a lot of blow-back from doctors when you (or any doctor) attributed the neuropathy to statin use? Do you have autonomic, sensory, and/or motor neuropathy? I hope these questions aren’t too personal, but I sure would appreciate some input from someone who’s experienced the same thing with the same cause.
My husband has no heat, cold, pressure, or pin-prick sensation in his feet to just above his ankles, and reduced sensation in his fingertips. He has excellent circulation in his feet and hands, no skin issues and no discoloration. His epidermal nerve fiber density in his feet is non-existent. His pain seems to be related to misfiring in the deeper nerves in his feet.
When my husband told me his PN was “idiopathic”, I decided to look into a real cause. I landed on statin use with the mechanism pointing to demyelination. He’s not diabetic and there’s no other obvious reason. However, his cardiologist, GP, and a couple of other doctors he’s seen insist the PN wasn’t caused by the statin. Other doctors, including one of two of his neurologists said that it can and does cause it.
His neuropathy has rapidly progressed in intensity and now includes autonomic dysfunction, but no impact on his motor nerves. The pain in his feet is constant and severe. No interventions, except massage (I am his personal masseuse), give him any meaningful relief. He’s tried all the conventional treatments, many unconventional treatments, and a few treatments that were downright questionable.
So, here I am, looking for something, anything, that will either reverse whatever is causing his neuropathy, or will eliminate or reduce the pain. I’m wondering if a senolytic medication, particularly rapamycin, might help rehabilitate his nerves.
He is now being seen by Mayo Clinic’s neurology department where he was tested for, among many other things, paraproteins. Tests revealed high kappa and lambda free light chains (ratio was in high-normal range), and he had high Alpha 2 globulin. He’s been referred to a hematologist to evaluate why he has abnormal paraprotein levels and will have an abdominal fat pad biopsy to look for amyloid deposits. He is currently attending an intensive program with Mayo Clinic’s Pain Rehabilitation Clinic on recommendation from his neurologists.
In the meantime, the pain from the neuropathy is literally killing him. It prevents him from getting enough sleep, and the quality of sleep is poor. As his “personal masseuse” I get very little sleep, as well, as I spend a good portion of time every day and night massaging his hypertonic legs
