Large-fiber neuropathy: Your prescrition meds & supplements?

@ray666 In 2020, Mayo gave me a diagnosis of large fiber and small fiber peripheral neuropathy. Mayo said no meds will help with my PN. With doc approval, I started on 600 mg. of ALA - 2 each day. I also take B-12 - 1000 mg. daily and 250 mg. of magnesium - 1 daily and vitamin D. I've been taking these supplements for a least 5 years. I find it hard to tell if anything works but my best guess is the ALA seemed to have effectiveness when I first started. The only way I would know for sure now is to stop ALA and see what happens which to me doesn't make sense. Is it possible the fact that progression has remained below my knees could be a benefit of any of these supplements? To me, that is unknown.

My diagnosis was in 2022, and I, too, was told no meds will help with my PN. Our med diet is also a near match. I take a 25 mg Losartan for hypertension, an 80 mg Atorvastatin to prevent stroke (first prescribed when I was hospitalized with sepsis), a 0.4 mg Tamsulosin for urinary incontinence, and drops of Latanoprost to prevent glaucoma. I know you know that I also have been on a daily regimen of EB-N5, prescribed by my neurologist, to help (in any way it can) with any progression of my PN. Like you, I'm hard-pressed to say if the EB-N5 is helping with my PN. However, I can report that my PN has not progressed, or if it has, the progression has been so incremental as to be of little consequence. Among supplements, I take 125 mcg of D-3, 200 mg of Magnesium Glycinate, 1400 mg of fish oil, and a multi-vitamin tab. I've been advised not to take any more B-12 because my labs show my B-12 is skyhigh. –Ray

Hi, Ray!
I, too, was diagnosed with long-fiber PN (additional description included "distal symmetric demyelinating sensorimotor") in late 2021 and I can assure you, that for me, there has been plenty of pain. My pain doctor, an anesthesiologist, has been prescribing 50mg of Tramadol four times a day (but 3 times is almost always enough) and 100 mg of Pregabalin, also three times a day since early 2022. Balance, gait, and numbness aside, this combination leaves me feeling as close to normal as possible. Since the late 1990s I have been taking, through my PCP: Atenolol, Hydrochlorothiazide, and Lisinopril for high blood pressure, Levothyroxine for low thyroid, Lisinopril for high cholesterol, and Atenolol for sleep. My lab tests at the semi-annual checkups have all been in normal range for as long as I can remember - at least 15 years. Supplements are many, including Vitamins C, D, and B12, Magnesium, Calcium, Pycnogenol, CoQ10, Cod Liver Oil capsules, "Green Food", a probiotic, and low-dose aspirin. I'd really like to pare down all the pills but I've had no health problems for so long, I figure the combination must be working for me, and neuropathy is more than enough to deal with. It does not seem to be progressing at this point.
I hope you are well, and that your sepsis is a thing of the past!
Barb

Ray - I do take 50 mg of Losartan and several other meds you take which I didn't mention in my prior post. I do scratch my head at times and wonder if any of these meds taken over many years may have caused the onset of PN and what supplements may or may not really help with our symptoms.

I see I listed Lisinopril twice and also Atenolol twice - gotta improve on my proofreading! Should exchange one Lisinopril for Simvastatin and for sleep it should be Ambien, not Atenolol.

Ed– I'm scratching my head, too. ("I do scratch my head at times and wonder if any of these meds taken over many years may have caused the onset of PN and what supplements may or may not really help with our symptoms.") More pills to counter sepsis were added during the time I was in rehab. Twice daily a nurse would appear and hand me a cup: "Your pills, Ray." The cup would contain what seems like a two dozen pills. (I'm sure it was more like eight or ten.) I'd down 'em one-by-one, wondering all the while, "Now this pill: Is this for the sepsis? Or my PN? If it's for the sepsis, could it worsen my PN? If it's for my PN, will it lessen the effectiveness of it's meant to have for my sepsis?" I felt like I was being turned into a Mulligan stew of medications. –Ray

Lisinopril … Ambien … Atenolol … It's all pharmacological Greek to me. 🙂 Why is everything named like something out of a sci-fi flick? "Lord Atenolol's starship is about to land on Simvastatin. Prepare to engage … "

I laughed out loud, Ray! You sound in good form - I will quit worrying! 😅

Your comment about the naming of meds brought me a chuckle. Thanks. I enjoyed that.

Ray - I hear you loud and clear and many of us who listen to our medical professionals, take their advice and follow through with taking supplements hoping it will reduce the effects of PN. Since the cause of PN remains a mystery for many of us, I think we are anxious to try what we think will work and it some cases, it does. Right now, without a cure, perhaps this is the best we can do.