Flecainide and peripheral neuropathy

[teach2learn]

I have been having advancing peripheral neuropathy in my feet and lower legs for over two years now, and, coincidentally, after three ablations, back on flecainide as a pip (taking 1/2 of a 100 MG tablet at night). It's not helping much, but I'm unwilling to up the dose, as the side effects are worse than the flutter. Someone told me flecainide can sometimes make afib worse, so I was looking that up (on good old google) and ran across two sources saying that it has been linked to peripheral neuropathy! Has anyone heard of this, or am I getting some AI misinformation based on previous searches? And yes, I will see my EC doc, too, but not for a few weeks yet.

[Bagrat]

Drugs.com which is a reliable source, mentions this as a very rare side effect which nearly always resolves slowly after stopping flecainide.

[teach2learn in reply to Bagrat]

Yes, Thanks. I think that's where I saw it, too.

[opal11uk]

I don't know the answer but I know there are several other drugs that could be tried so check with your cardiologist.

[Ppiman]

I have PN and can sympathise. Last evening it was awful. Many drugs are associated with it, but much more likely it is an aspect of getting older (my doctor's view and I tend to agree as I have had it for so long now, starting years ago with hot feet). It has worsened of late as have my arrhythmias, and I have gone through your process of thought, thinking especially of the PPI tablets I take for acid reflux.

I suspect the reality is that both PN and arrhythmias being age related are following their natural course. Being 70 didn't seem "old" not so long ago - but I guess it is and is really the cause... .

Steve

[teach2learn in reply to Ppiman]

Yeah, at 77, probably right, but it would be so great to find the cause that could reverse it!

[Beta44]

I was developing neuropathy in my feet after taking Flecainide for about 20 years. I stopped the Flecainide after successful ablation nearly 10 years ago. I still have the neuropathy but it hasn’t got any worse.

Peter

[Pommerania78 in reply to Beta44]

Had the Flecainide stopped stopped working when you had the ablation? Thanks.

[Beta44 in reply to Pommerania78]

Exactly that, the episodes were becoming more frequent and longer.

[Pommerania78 in reply to Beta44]

Why do you think that was the case, and could there have been something that you could have done to prevent that? How long had you taken Flecainide when it began to stop working? Thanks.

[ozziebob]

I have neuropathy in my feet as well. After inquiring I found this research ...

"Peripheral neuropathy is the most common presentation of vitamin B12 deficiency" ...

so I requested a blood test.

Results put me midrange normal, so I also have been left thinking that "age related nerve degeneration" is the cause of my neuropathy.

Unless the NHS blood test doesn't really reflect a B12 deficiency?

I need to do more work on this.

[Ppiman in reply to ozziebob]

I did much the same. Hopes ran high when the first test put me on borderline but the second was normal.

I have a friend who always seems to find an easy way to cure his ills - no luck here.

Steve

[Tomred in reply to ozziebob]

Hi BOB, DO A BIT OF RESEARCH INTO THE SUPPLEMENT ALA OR RALA FOR PN,I KNOW FOR A FACT MY PARTNER HAS HAD MASSIVE RELIEF SINCE USING IT, ITS SAID TO HELP REGROW NERVE ENDINGS, MY PARTNER HAD VERY QUICK RESULTS AFTER AGONISING PAIN FOR 2 YEARS,I DONT KNOW IF THIS WORKS FOR EVERYONE BUT CERTAINLY WORTH LOOKING INTO .

[ozziebob in reply to Tomred]

Alpha-lipoic acid ... thanks for the heads-up.

What dosage and frequency worked for your partner? Is he/she still on this regime? And for how long?

[Tomred in reply to ozziebob]

she has been taking approx 3 years , dose is 300mg x2 per day, takes ala, but lately been reading r-ala is more bioavailable , i just dont have the time to write the full story here and now, regarding her problems, and how and why she started taking ala, but it worked beyond belief for her bob.

[teach2learn in reply to ozziebob]

Apparently, it's helpful for diabetic neuropathy because it lowers blood sugar. No help there if not diabetes related.

[ozziebob in reply to teach2learn]

Thanks for that further info. I did wonder re the diabetes.

Hopefully Tomred will, when he has time, get back to me with the medical circumstances of his partner that provoked his partner's use of ala.🤞

[Tomred in reply to ozziebob]

Yes, Bob, i failed to mention, my partner had diabetic neuropathy, plus her pinky toe turned necrotic ,it was due to be amputated so 3 days of ala and benfotamine her toe totally reversed, honestly it was like a miracle , fast forward a year later and the pinky on her other foot also went necrotic , again 3 days later it totally reversed also , unbelieveable, plus all the pain was gone, she had been in agony on both occasions, vascular surgeon was lost for words, needless to say she continues to take both supplements plus has added pine bark extract to the mix for blood flow.

[ozziebob in reply to Tomred]

Is it Tom?

Anyway, thanks for getting back to me about your partner's situation and treatment protocol. Very interesting.🤔

All the 3 supplements you mention are not inexpensive, but still a lot better than losing toes unnecessarily because of medical ignorance? And I can imagine the NHS didn't prescribe or pay for any of them? So well done to your partner.

As for me, I'm 77 now, and without any deficiencies or conditions I can associate with my neuropathy, I can only think it is age related. Thanks for your suggestion re ala and r-ala, but with cost a big factor for me, I probably won't be supplementing going forward.

But you have certainly widened my knowledge about supplements and the treatment of diabetic related neuropathy, and hopefully the same applies to others on the Forum.

bob

[Qualipop]

I'vehad peripheral neuropathy in feet and ankles for around 10 years but it's nothing to do with medication. It's like having tight elastic bands round my ankles.

[teach2learn in reply to Qualipop]

Yep, me too, going on three years. Now getting edema with it. It's not due to diabetes in my case, so looking for the cause. Docs say it's called ideopathic neuropathy when the don't know why...kind of like idiotpathy, dang it.

[Qualipop in reply to teach2learn]

Same here; no explanation, no investigations, no treatment. Also have slight swelling in one ankle yet not the other

[Ladysmith64]

hi I have A/F and Dilated Cardiomyopathy for approx 10yrs now. I have found a way to survive with lifestyle changes however I am now beset with Neuropathy in my feet and ‘getting worse. I have never taken Flecanide so unsure about the affects but symptoms for me are night cramp and very uncomfortable tightness of calf muscles in both legs! Walking is now no longer a pleasure but am advised by GP to look beyond pain and walking is imperative! I guess if ignored one is heading for ‘wheelchair’ which is scary to say the least. I am now enquiring with Private Health in order to see if they have ‘options’ Bob