Anyone else get neurothapy from taking Flecainide?

[SilverliningsForNow]

I’ve been taking Flecainide for 18 months with no obvious side effects but in the last 10 days I have been getting neuropathy in my legs and sometimes in my arms. I am also on Tamoxifen and it may be that it is that but the medics think it is as a result of drug toxicity. My EP suggested I stop taking the morning dose and see if it subsides but for me that is quite a scary option as I haven’t had AF for nearly a year now. Just curious 😝 x

[nikonBlue]

hi there. You might be aware that the neuropathy side effect is more than likely coming from the Tamoxifen as ace inhibitors are known to cause this. On saying that, I too was on both meds but the neuropathy only started after my breast cancer treatment, in fact I'd say it started soon after I'd finished my radiotherapy sessions (19). This makes me feel the Flecainide isn't responsible but ike all medications, they affect people in different ways. I had to come off the Tamoxifen though as the level of 'overheating' was impossible to deal with and am now on Exemastane. Neuropathy is horrible I know and like you I got it in my legs feet and hands. I still get it but usually it's very mild and doesn't last very long. Hope this helps and take care.

Blue

[SilverliningsForNow in reply to nikonBlue]

Thank you so much for replying. That is so helpful. I am going to talk to my oncologist as it is getting much worst 😩 x

[SilverliningsForNow in reply to nikonBlue]

Were you OK to go on Exemastane? Does that not have more of an effect on heart problems? Lx

[nikonBlue in reply to SilverliningsForNow]

Hmm,

I wasn't told about that to be honest so I will do some research of my own and check this out, thanks for bringing that to my attention!

Blue

[Beta44]

I took Flecainide for about 20 years prior to an ablation 7 years ago. I’m the end I was experiencing numbness particularly in mr heels. Fortunately, it hasn’t got worse since I stopped taking it. Rather worrying to have symptoms after only 18 months. Definitely worth getting it investigated.

Good luck,

Peter

[SilverliningsForNow in reply to Beta44]

Thank you so much for your reply. I’m going to talk to my EP and my Oncologist and see if I can sort this. x

[Ppiman]

I started with this some years ago and wondered if it wasn't Lyme disease related but my blood tests showed not. I don't take flecainide but thought I would write. It's an uncomfortable thing to have but I found it doesn't worsen over time. After one early initial "flare up" some years ago, which I felt in various places, it is has remained where it began, in my feet and lower legs. My GP says it's not that uncommon in folk over 60, so I have not investigated it further.

Steve

[SilverliningsForNow in reply to Ppiman]

Thank you for replying. It wakes me up though and I find it so difficult to sleep 😩

[Bagrat]

Slightly off topic.

I was on tamoxifen and flecainide. Oncologist said as I was low risk could choose between tamoxifen and aromatase inhibitor. Didn't fancy higher risk of osteoporosis as am good at falling so chose tamoxifen. Took it for12 months but dide effects a bit yuck. Read could potentiate effects of flecainide ( put them into drug interactions on drugs.com).

There is an algorhythm you could use on line preferably with help of breast care nurse. This showed it would increase my life expectancy by 0.6% so I stopped it with her agreement.

Re neuropathy could be a combination, we are all different but when I worked in palliative care many moons ago we used flecainide to control intractable nerve pain, so can see the connection.

Not much help really. Hope you get sorted out very soon

[irene75359]

I have neuropathy in my hands and feet due to chemotherapy, I am wondering if this is what you have. I know that it can begin without warning months and even years after treatment. I do hope you get it sorted out.

[mcpacs]

You can go to drugs.com under the section "Nervous system" and it discusses at least 6 cases of Flecainide-induced peripheral neuropathy had been reported (I'm assuming from the clinical trials). Here's the link: drugs.com/sfx/flecainide-si...

I was on 300 mg a day (150 mg twice a day) of Flecainide for about 5 years before I had my ablation for Atrial Fibrillation in 2011. A year ago I went back on 200 mg (100 mg twice a day) because of ectopic heartbeats, mostly Premature Atrial Contractions (PAC's) I was having. It has really helped reduce the ectopic heartbeats.

However, to your issue with the neuropathy, I have not noticed any of that in my case. What dosage are you on? I'm just guessing you would probably see more side effects at a higher dose.

[Roobydooby]

Just this week I’ve been to see my GP with burning feelings in my legs & feet, he mentioned peripheral neuropathy but wants to check my circulation first so am having that done next week.

He didn’t mention any possible connection with Flecainide. I’ve been taking 2 x 100g a day for the last 4 years with no side effects. I’ll certainly mention this to him! Thanks for raising this

Jen

[Hylda2]

was on Flecainide for years and have had dreadful pins and needles in feet, shins and hands. Have stopped taking Flecainide as I have a pacemaker and am waiting for the next stage but cannot say my feet are any better.

I know it sounds odd but how are your B12 levels? Low B12 can cause this problem

D

[Nandini66]

Hi. I too am on Tamoxifen and Flecainide. I didn’t like Exemestane and did like the bone stregthening aspect of Tamoxifen. In 2019 I had DCIS, Stage 0, clean margins with a lumpectomy, so decided to just take 10 mg instead of 20mg as I dislike taking any meds. My oncologist didn’t attempt to argue me out of this decision since I didn’t have invasive breast cancer. Earlier this year I was put on Flecanide for what was thought to be Atrial Flutter. I developed peripheral neuropathy in my feet long before I started to take Flecainide. Thanks to your post, I will ask my oncologist about this. I’m sorry you have it though, as it’s unpleasant.